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1
NIHR135286
BRHUmB: Building a Research Hub for Palliative Care in Birmingham and the West Midlands
NIHR (non-ODA)
Research
Complete
Health and Social Care Delivery Research
Commissioned
HSDR Commissioned
£83 458
1 janvier 2022
31 décembre 2022
We know that hospice and palliative care services have changed in the past few years in terms of moving care into the home setting. Since the pandemic, hospice in-patient admissions have reduced, some palliative care nursing services have been restricted, and emergency admissions of people in the last year of life are rising. Informal carers and relatives in our patient and public advisory group have raised concerns that ‘the different parts of system do not seem to talk to each other’ and this ‘makes it more difficult to manage on top of the difficulties you already have’, clearly impacting upon the experience for both the person dying and their carers /relatives. What has become clear is that to address these issues we need to coordinate palliative care research and knowledge exchange activities in a better was, not just within palliative health and social care organisations, but across them. In collaboration with our PPI advisory group (made up of people from diverse background
Background: The need for palliative care is predicted to increase between 25-42% by 2040 (Etkind et al. 2017) with up to 90% of all people dying in England having palliative care needs (Finucane et al. 2020).The NHS is already seeking to increase generalist and specialist palliative care support, a trend accelerated by Covid-19 but there is a lack of evidence to inform such developments. A particularly challenging aspect of care as death nears is the increased risk of ‘Palliative Care Crisis’; a sudden deterioration which requires an urgent response. Such crises are complex and multifactorial fuelled by the diverse needs of the dying and those close to them. In the absence of sufficient professional and family support, hospital admission (often emergency) is not unusual (Hoare et al. 2019). ‘Palliative Care Crises’ are rarely well managed by single service interventions and the emphasis needs to be on integrated systems of care. To inform such developments, evidence is needed from h
Academic
University of Birmingham
B15 2TT
52,453
-1,928
Dr John MacArtney/Professor Cara Bailey
0000-0002-0879-4277/0000-0003-0865-9240
Joint Lead Applicant/Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
2
NIHR302908
What contributes to successful adult community palliative rehabilitation? An investigation into models of practice in the UK.
Non-NIHR funding
Training
Active
HEE/NIHR Integrated Clinical and Practitioner Academic Programme
Trainee Development
NIHR Doctoral Clinical and Practitioner Academic Fellowship
£214 499
1 septembre 2023
31 mai 2027
Background Palliative care is specialised holistic care for people living with a serious illness, such as cancer or heart failure. There are approximately 455,000 adults living in the UK requiring palliative care and only 240,000 receive it, highlighting a need for greater investment in palliative care services including rehabilitation. Rehabilitation in palliative care has the goal of improving function (such as washing and dressing) and wellbeing meaning patients can live as independently as possible. Examples include helping someone to go on holiday with their family or it could be helping someone to sit up safely to eat and drink. Rehabilitation in palliative care is often carried out by physiotherapists and occupational therapists working in a team; where this project mentions 'rehabilitation', it could refer to treatment by physiotherapists, occupational therapists, or both. Rehabilitation in palliative care can occur in a hospital, in a hospice, in an outpatient setting suc
Background Currently in the UK 455,000 adults need palliative care and approximately 240,000 receive it (1). It is anticipated that the number of individuals requiring palliative care will increase by 55% in the next 10 years (1). Rehabilitation is an integral part of palliative care and has international relevance (2). Rehabilitation in palliative care aims to optimise function and wellbeing, work towards personal goals and priorities, and enable individuals to live as fully and independently as possible (3). Community rehabilitation (delivered in a patient's home) is distinct from rehabilitation delivered in a hospital or hospice setting and can often reach patients that are unable to access these services due to transport, anxiety or social issues. Although there is an evidence base on hospital and hospice-based rehabilitation, there is a sparse evidence base on community palliative care rehabilitation. It is important to understand the range of community palliative rehabilitation m
Government/NHS
Sheffield Teaching Hospitals NHS Foundation Trust
S10 2SB
53,378
-1,496
Mrs Jane Manson
0000-0002-0116-4002
Award Holder
Generic Health Relevance
7. Management of Diseases and Conditions/7. Management of Diseases and Conditions/8. Health and Social Care Services Research
7.2 End of life care/7.3 Management and decision making/8.1 Organisation and delivery of services
Social Care
Award does not have an ODA Downstream Partner
3
NIHR135170
The RE-EQUIPP Care Partnership: REducing inEQUalities through Integration of Primary and Palliative Care
NIHR (non-ODA)
Research
Complete
Health Technology Assessment
Commissioned
HTA Commissioned
£89 460
1 février 2022
31 janvier 2023
Background Good palliative care is necessary to ensure that all people live as well as possible in the last year, months or days of their lives, but access to good palliative care is patchy and unequal. Thousands of people have died during the COVID-19 pandemic, many more at home, including in care homes, than in previous years, and inequalities in access to palliative care have unfortunately worsened during the pandemic. Primary care is the first place that people in the community go to for healthcare advice and treatment, ranging from disease prevention and treatment to rehabilitation and palliative care. Primary care includes community nurses, opticians, pharmacists and dentists. General practice is the medical speciality aligned to primary care. Primary care has a key role in providing palliative care to people in the community, alongside palliative care services, but this is often overlooked in policy. Research that includes primary and palliative care together is rare. T
Research question: How can innovative integrated whole-system models of cross-boundary primary and palliative care reduce inequalities in access to high quality palliative care? Background The number of people dying at home has increased by 39% during the COVID-19 pandemic. Inequalities in access to palliative care for people with multi-morbidity and those from areas of high socioeconomic deprivation and diversity, and rural areas, persist. Primary care (including general practitioners and community nurses) provide the majority of palliative and end-of-life care in the community and have a key role in addressing longstanding inequalities, alongside palliative care services. However primary care receives little attention in palliative care policy, and cross-boundary primary and palliative care research is rare. This new multiagency and multidisciplinary partnership will lead high quality, collaborative primary and palliative care research proposals to address the gap in the cur
Academic
The University of Sheffield
S10 2TN
53,381
-1,489
Dr Sarah Mitchell/Professor Catherine Evans
0000-0002-1477-7860/0000-0003-0034-7402
Chief Investigator/Joint Lead Applicant
Generic Health Relevance
7. Management of Diseases and Conditions/8. Health and Social Care Services Research
7.4 Resources and infrastructure (disease management)/8.5 Resources and infrastructure (health services)
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
4
08/1809/233
Transitions to palliative care for older people in acute hospitals
NIHR (non-ODA)
Research
Complete
Health and Social Care Delivery Research
Commissioned
Service Delivery and Organisation
£444 134
1 janvier 2009
31 juillet 2012
The UK Cancer Tsar has identified that ‘a proportion of...dying patients receive very poor care' in acute hospitals. As 90% of people spend time in hospital in their final year of life and 56% of people die in hospital, this ‘proportion' translates into a significant number of patients receiving poor care, most of whom are older. The study will explore the need to improve care for older people at the end-of-life by exploring need for, and provision of, palliative care at two hospitals in England serving contrasting populations. Using a method developed by one of the study applicants, a census will be carried out of all inpatients present in the hospitals during the census period. Medical and nursing staff will be asked to answer questions about each inpatient to identify whether they have palliative care needs. For patients who are identified as having palliative care needs, further questions will explore whether the patient's care incorporates a palliative element and whether
Whilst the imminent publication of the End of Life strategy moves palliative care higher up the NHS agenda, there is still an insufficient evidence base to inform service planning and delivery in certain areas. Palliative care in acute hospitals, typically provided by non-palliative care specialists, remains under-explored, despite evidence that a significant number of primarily older people receive poor care in this setting at the end of life. This study addresses the identified need to improve palliative care management in acute hospitals through an exploration of transitions from 'active care' (focusing on cure and chronic disease management) to care incorporating a 'palliative' element, where the focus is on maximising quality of remaining life. It is not supposed that this transition is, or should be, complete; however, increasingly NHS care is being organised on the assumption that such a transition does, and should occur. Nevertheless, how palliative care transitions are mana
Academic
The University of Sheffield
S10 2TN
53,381
-1,489
Professor Christine Ingleton
Not Provided
Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions/8. Health and Social Care Services Research/8. Health and Social Care Services Research
7.2 End of life care/8.2 Health and welfare economics/8.1 Organisation and delivery of services
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
5
DRF-2014-07-065
Palliative Care for Children and Young People with Life-Limiting Conditions: What? When? How?
NIHR (non-ODA)
Training
Complete
NIHR Fellowships
Trainee Development
Doctoral Research Fellowship
£400 259
1 novembre 2014
31 octobre 2019
The study is an in-depth qualitative investigation into palliative care service design and delivery for children and young people (CYP) with life-limiting conditions. Experiences and expectations of palliative care services, including facilitators and barriers to their design and delivery will be investigated from the perspective of key stakeholders, including CYP with life-limiting conditions, their relatives or carers, relevant professionals in health and social care, and service commissioners. Evidence will inform the design and development of an integrated model of palliative care for CYP with life-limiting conditions, which is intended to inform future commissioning, national policy and future research.
Background Current definitions of palliative care for CYP are broad and non-specific, which provides practical challenges for patients and families, the healthcare professionals caring for them, and those responsible for commissioning services. Palliative care services for CYP around the UK differ between regions, with multiple statutory and voluntary providers involved. The future development of high quality, standardised palliative care services which serve CYP with life-limiting illness and their families, presents a huge challenge for the NHS. Research Questions How do current definitions of palliative care services for CYP concord with service delivery, policy and guidance in the UK? What is the current evidence base for practice and policy related to palliative care service delivery for CYP? What are the experiences and preferences of CYP, and/or their relatives or carers, in relation to the delivery of palliative care services? What are the facilitators and barriers to the de
Academic
University of Warwick
CV4 8UW
52,386
-1,565
Dr Sarah Mitchell
0000-0002-1477-7860
Award Holder
Generic Health Relevance
8. Health and Social Care Services Research/7. Management of Diseases and Conditions
8.4 Research design and methodologies/7.2 End of life care
Social Care
Award does not have an ODA Downstream Partner
6
NIHR134440
NIHR Global Health Research Group on Global Health and Palliative Care (GHAP): expanding access
NIHR (ODA)
Research
Active
Global Health Research Units and Groups
Researcher Led
Global Health Research Groups
£2 694 302
1 août 2022
31 juillet 2026
Aim of the research This research aims to develop ways for people in sub-Saharan Africa to receive palliative care if they need it, focusing on groups that we know are not getting the care they need. Background to the research Palliative care is for people who are living with incurable illness that is likely to shorten their lives. Because palliative care can reduce suffering and improve wellbeing for patients and families, it is now seen as an essential part of healthcare for all. But although most people who need palliative care live in poorer countries, that is also where there is less availability of palliative care. We have found that people with incurable illness in poorer countries have a lot of unnecessary suffering, and the numbers of people suffering is rising rapidly. We have found three groups of people who could benefit from better access to palliative care in sub-Saharan Africa: children and young people, patients living with cancer, and people with long-term il
Research question How can palliative care access be expanded to underserved groups to meet UHC goals in sub-Saharan Africa? Background Universal Health Coverage goals include palliative care as an essential health service to reduce the global inequity of suffering in progressive illness. The WHO reports that 80% of those who need palliative care live in LMIC, while <10% receive it. By 2060, 83% of all deaths with serious health-related suffering will occur in LMIC (5.14 million in low-income countries, 16.84 million lower-middle and 17.93 million upper-middle). The greatest increase will be in low-income countries (155%). In sub-Saharan Africa, poor palliative care access has been identified for children (of 21 million children globally who could benefit, 97% live in LMIC), for adults attending oncology services (cancer will be the greatest cause of serious health-related suffering by 2060), and for those with chronic illness attending primary care. This is compounded by lack of c
Academic
King's College London
SE1 8WA
51,505
-0,113
Professor Richard Harding/Associate Professor Klaus von Pressentin
0000-0001-9653-8689/0000-0001-5965-9721
Chief Investigator/Joint Lead Applicant
Cancer and neoplasms/Generic Health Relevance
7. Management of Diseases and Conditions/8. Health and Social Care Services Research
7.2 End of life care/8.1 Organisation and delivery of services
Award not coded to a curated portfolio
Uganda/Uganda/Uganda/South Africa/Ghana/Zimbabwe/Uganda/Zimbabwe/United Kingdom
7
CAT/CL10/003
Optomising pallative care for older people in the community: development and evaluation of a new short term collaborative service
Non-NIHR funding
Training
Complete
HEE/NIHR Integrated Clinical and Practitioner Academic Programme
Trainee Development
NIHR/HEE CAT Clinical Lectureship
£156 284
1 mars 2011
28 février 2015
Context: People are living longer and more and more die following a period of increased illness and symptoms. Palliative care is advocated for older people to address this, but with little evidence of effectiveness. Short-term palliative care may be cost effective and appropriate because it relies primarily on existing community services, with additional shared support from palliative care services.
Training Award
Academic
King's College London
SE1 8WA
51,505
-0,113
Professor Catherine Evans
0000-0003-0034-7402
Award Holder
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Social Care
Award does not have an ODA Downstream Partner
8
NIHR152115
Integrated Palliative Care in Oncology: a Realist Synthesis.
NIHR (non-ODA)
Research
Active
Health and Social Care Delivery Research
Researcher Led
HSDR Researcher Led
£295 151
1 juin 2023
30 novembre 2024
Globally cancer is a leading cause of mortality, which accounted for nearly 10 million deaths in 2020. The incidence of cancer rises dramatically with age, for example the peak rate of cancer cases between 2015-2017 in the UK were in persons aged 85-89 (Cancer incidence by age | Cancer Research UK 31/05/2021). Relief from physical, psychosocial, and spiritual problems through palliative care is possible for more than 90% of patients with advanced stages of cancer. Palliative care aims to relieve, rather than cure, symptoms associated with cancer and improve the quality of life of both patients and their family members. To date several studies have documented the benefits of palliative care for persons with cancer, including improved quality of life, mood, satisfaction and survival. Despite this, patients with cancer continue to have unmet palliative care needs, and palliative care services are often engaged late in their care, if at all. Amid this under-utilization, questions remain a
Background There are currently 2.5 million people living with cancer in the UK and by the year 2030, this figure may be as high as four million. Cancer is predominantly a disease of older age, the peak rate of cancer cases between 2015-2017 in the UK were in persons aged 85-89. Disease burden is considerable with profound holistic impacts across biopsychosocial domains which affect persons with cancer as well as their family caregivers. Emerging evidence demonstrates improved quality of life, reduced symptom burden, and lower health services costs when integrated palliative care and cancer care are implemented. Integrated palliative care aims to achieve continuity of care by integrating administrative, organizational, and clinical services that make up the patients care network. However, integrated palliative care for cancer is not common practice. It is over a decade since the first national strategy for end-of-life care in England, 2008, closely followed by other nation specific str
Academic
The Queen's University of Belfast
BT7 1NN
54,585
-5,934
Dr Tracey McConnell/Professor Joanne Reid
0000-0003-1292-8597/0000-0001-5820-862X
Joint Lead Applicant/Chief Investigator
Cancer and neoplasms
8. Health and Social Care Services Research
8.1 Organisation and delivery of services
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
9
NIHR162177
Equitable Palliative care In the Community through Primary Care (EPIC-PC): a realist study to propose a new integrated neighbourhood team approach to palliative and end of life care.
NIHR (non-ODA)
Research
Contracted
Health and Social Care Delivery Research
Commissioned
HSDR Commissioned
£1 117 501
1 février 2025
31 janvier 2028
Problem: Palliative and end of life care aims to improve quality of life for people with any serious illness that can’t be cured in the last years, months, weeks, or days of their lives. In England, almost one-quarter of people who could benefit from palliative and end of life care do not receive it. People who live in the most deprived areas are least likely to receive palliative and end of life care. Primary care includes general practices, community nursing and pharmacies. These are the first places that people go to for health care and treatment in the community. Primary care provides most palliative and end of life care to people at home and in care homes, but this is very variable. In England, primary care services are working more closely with specialist services, such as hospices or NHS specialist palliative care teams, in “Integrated Neighbourhood Teams”. Integration could improve palliative and end of life care and reduce inequities and inequalities, but research is urgently
Research question: What are the key contexts, resources and components required for an integrated approach to palliative and end of life care to deliver improved and more equitable outcomes for patients and carers? Background: Avoidable and unfair differences in access to high quality palliative care exist for different groups of people and communities. Primary and community care teams deliver most palliative and end of life care to people at home but the quality of care provided is highly variable in practice. This is an under-researched area and receives little attention in service design and policy. Aims / Objectives: This realist research will investigate the key contexts, resources and components required for an integrated approach to palliative and end of life care, to achieve more equitable, beneficial outcomes. Objectives: 1. To understand patient and carer experience, priorities, and preferences, regarding the provision of community end of life care, with a focus on ar
Academic
University of Leeds
LS2 9JT
53,808
-1,553
Dr Sarah Mitchell/Professor Lucy Ziegler
0000-0002-1477-7860/0000-0001-9563-5014
Chief Investigator/Joint Lead Applicant
Generic Health Relevance
7. Management of Diseases and Conditions/8. Health and Social Care Services Research
7.2 End of life care/8.1 Organisation and delivery of services
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
10
NIHR202283
Supporting people to make decisions that are right for them: Developing a patient-directed knowledge tool to support shared decision-making for deprescribing in palliative care
NIHR (non-ODA)
Research
Complete
Research for Patient Benefit
Researcher Led
Research for Patient Benefit
£149 932
1 décembre 2021
30 novembre 2023
Palliative care is an approach that aims to control symptoms, and improve the quality of life of patients as well as their families. It is often needed when people have incurable conditions. Over 300,000 people in England need palliative care each year. When palliative care is needed, people are commonly prescribed lots of different medications, which is called polypharmacy . Polypharmacy increases the risk of developing side effects. Research also tells us that people in palliative care are often prescribed medications when the harms outweigh the benefits. This is a big problem because we also know people find taking lots of medications a burden. One potential solution to this problem is to think about ways to reduce or stop medication that is no longer doing any good or when the harms outweigh the benefits. This process is called deprescribing. In any deprescribing approach, it is important that people are supported to make decisions that are right for them &ndash; a process kno
Background: Deprescribing is an approach that could be used to overcome the challenges of polypharmacy, a high pill burden, and inappropriate medication use &ndash; something which is frequently reported in palliative care. It is important for any potential deprescribing approach in this context, that the decision to continue, reduce or stop a medication is shared between the patient and the healthcare professional. A shared decision involves bringing together the expertise of the patient and the expertise of the healthcare professional, and collaboratively weighing up the different options in light of both perspectives. Despite the potential benefits of shared decision-making in palliative care, there is evidence to suggest that this process does not routinely occur, and, when it does, many patients do not achieve their preferred levels of involvement in reaching a decision. To promote shared decision-making, there have been a number of patient-directed knowledge tools developed
Government/NHS
The Newcastle Upon Tyne Hospitals NHS Foundation Trust
NE7 7DN
55,003
-1,593
Professor Adam Todd
0000-0003-1496-9341
Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
MLTC
Award does not have an ODA Downstream Partner
11
ICA-SCL-2018-04-ST2-001
Equipping community services to meet the palliative care needs of older people with frailty approaching the end of life; a mixed methods study
Non-NIHR funding
Training
Active
HEE/NIHR Integrated Clinical and Practitioner Academic Programme
Trainee Development
HEE/NIHR ICA Programme Senior Clinical Lectureship
£489 164
1 septembre 2019
30 novembre 2024
This study will help home care services to meet the needs of severely frail elders who are approaching the end of their lives, and their families. Background: More older people are living and dying with frailty. Frailty is age-related. It describes the gradual loss of reserves that help older people bounce back after an illness. Severely frail elders do not have this ability. They often require many health and social care services, such as palliative care. Palliative care makes you as comfortable as possible if your illness is incurable. Currently we lack understanding of frail elders' particular palliative care needs and are not sure of the right community services. Families maybe unsure about when and who to call for help. Therefore many severely frail elders, who want to be at home and prioritise quality of life, spend their last year undergoing unnecessary treatments. Older people with severe frailty need co-ordinated, new approaches to their palliative care needs to prevent this.
Background Frailty is a leading cause of death in older people1 and frail elders are projected to be the main recipients of palliative care(PC)2. Elders living and dying with frailty require integrated services3,4, including PC5,6. However, because their specific PC needs are poorly understood7 and service response is underdeveloped8,9 frail elders are less likely to receive PC. Innovative multi-agency community PC services are emerging8,10. However, there is no evidence on the key features and service configurations necessary to deliver increased quality care and decreased burden on frail elders/families, e.g. inappropriate hospital admissions and NHS costs, averaging £10,000 per person in year before death11. Study Aim To identify and understand PC needs of frail elders, develop the evidence-base for community PC provision and co-design resources to better access and deliver PC. Methods Four layered Phases Phase1 (1-12months) Objective: Identify core frail elders' PC needs.
Academic
University of Surrey
GU2 7XH
51,243
-0,588
Professor Caroline Nicholson
0000-0003-4422-413X
Award Holder
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
12
PB-PG-0416-20004
Supporting Timely Engagement with Palliative Care (STEP)
NIHR (non-ODA)
Research
Complete
Research for Patient Benefit
Researcher Led
Research for Patient Benefit
£235 161
1 novembre 2017
30 septembre 2020
The aim of this project is to develop an intervention to help patients and their clinicians make timely informed decisions about palliative care. For patients with advanced cancer, several research studies [1-6] have shown that early access to palliative 3-6 months before death care can improve quality of life, reduce emergency hospital admissions, minimise aggressive cancer treatments and enable patients to make choices about their end of life care, including exercising the choice to die at home. Our research undertaken in a UK population of almost four thousand patients with advanced cancer found that the average duration of palliative care was only 6 weeks and more than a third of patients did not receive any palliative care at all. One of the reasons patients are referred late or not at all is that it can often be very difficult for clinicians to decide when and how to initiate a conversation about palliative care. In this project we will work closely with patients and clinicians
The aim of this project is to develop and evaluate an intervention to help patients with advanced cancer and their clinicians make informed decisions about palliative care. For patients with advanced cancer, palliative care received at least 3-6 months before death can improve symptoms, reduce hospital admissions, improve quality of life and enable patients to make choices about their care [1-6]. In a UK population of 3,950 patients with advanced cancer, the median duration of palliative care was only 36 days. We have demonstrated in our current study Time4PallCare that this short time is insufficient to maximise the benefits of palliative care. Initiating a conversation about palliative care is challenging for some health professionals and patients often have unmet information needs and misconceptions about the role of palliative care. Of 31 inpatient and outpatient oncology units across 20 hospitals within Yorkshire and Humber only three had information about palliative care availab
Government/NHS
NHS West Yorkshire Integrated Care Board
WF1 1LT
53,680
-1,496
Professor Lucy Ziegler
0000-0001-9563-5014
Chief Investigator
Cancer and neoplasms
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
13
PB-PG-0815-20030
Pharmacological and non-pharmacological interventions to improve symptom control and quality of life in patients with interstitial lung disease: a systematic review
NIHR (non-ODA)
Research
Complete
Research for Patient Benefit
Researcher Led
Research for Patient Benefit
£65 276
14 février 2017
13 février 2018
Why we are doing this research Interstitial lung diseases (ILD) are serious lung diseases that generally affect people over 60 years of age. The main symptom is shortness of breath, which can have a considerable impact on a patient s life. There are numerous types of ILD. Many types respond well to treatment, but others are progressive and lung damage is irreversible. For these people, effective therapies to reduce symptoms and improve quality of life (so called palliative therapies) are essential. Important advances have been made in the last 5 years in the development of palliative therapies for ILD, but recent work has shown that health professionals feel poorly equipped to manage the symptoms of these patients. Previous research summarising palliative therapies for ILD is out of date. We aim to bring together the most up-to-date evidence on treatments for symptom control in ILD by updating an existing systematic review previously undertaken by authors from this research team
Design: systematic review of interventions to improve symptom control and quality of life in patients with interstitial lung disease. Search strategy: A systematic search of electronic databases (e.g MEDLINE, Embase, Cochrane Library) and other sources will be undertaken by an experienced information scientist, with databases being searched from the date of the searches from our previous systematic review in this area (September 2011) to the current date. There will be no language restrictions, translation permitting we will include all non-English studies. Review methods: The systematic review will be undertaken in accordance with standard guidance. The target population will be people with a confirmed diagnosis of an ILD. Studies will be included if they examine available interventions which aim to manage symptoms of ILDs, including oxygen therapy, opioids, corticosteroids, thalidomide and non-invasive mechanical ventilation. Any prospective study will be considered. All studies
Government/NHS
King's College Hospital NHS Foundation Trust
SE5 9RS
51,468
-0,094
Dr Sabrina Bajwah
0000-0001-5338-8107
Chief Investigator
Respiratory
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
14
NIHR204938
Improving patients’, carers’ and primary care healthcare professionals’ experiences of discharge communication from specialist palliative care to community settings: a qualitative interview study
NIHR (non-ODA)
Research
Active
Research for Patient Benefit
Researcher Led
Research for Patient Benefit
£154 740
1 janvier 2024
2 avril 2025
Aims of the research This aim of this study is to understand patients , carers , and general practice professionals experiences of discharge communications from specialist palliative care. We will listen to the experiences of these groups to identify how to improve discharge communication in ways that better support patients and carers needs. Background to the research In the next twenty years, more people are expected to die in community settings, such as their home. Specialist palliative care is a service often provided by hospices and hospitals that provides support for people with illnesses that cannot be cured and those at the end of their life who are dying, and their close persons. Some people think discharge from specialist palliative care cannot happen - but it does. Around a third of patients are discharged and move to a community setting, as their needs and preferences change. When someone is discharged, there should be &ldquo;discharge communication&rdquo; with the p
Research question How can specialist palliative care discharge communications to primary care better support patient and carer needs? Background The need for palliative care is increasing, with most people dying in community-based settings. Patients who have benefited from specialist intervention during periods of acute/complex palliative care needs often transition from specialist-to-primary care once such needs have been controlled. Effective communication between services is central to co-ordination of care to avoid the potential consequences of unmet needs, fragmented care, and poor patient and family experience. Discharge communications are a key component of care transitions. Our previous research found heterogeneity in the quality of specialist palliative care discharge communications to primary care, along with inconsistencies in copying in patients to discharge communication. We also found that little is known about the effects of these variable practices on patients , car
Government/NHS
NHS COVENTRY AND WARWICKSHIRE INTEGRATED CARE BOARD
CV2 2DX
52,421
-1,438
Dr John MacArtney/Dr Katharine Weetman
0000-0002-0879-4277/0000-0003-0377-3933
Joint Lead Applicant/Chief Investigator
Awaiting Health Category Coding
9. Awaiting RAC Coding
9.1 Awaiting RAC Coding
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
15
NIHR135350
Living well and Dying well for older people within the last year of life in rural and remote communities
NIHR (non-ODA)
Research
Complete
Public Health Research
Commissioned
PHR Commissioned
£93 126
1 avril 2022
31 mars 2023
Background More older people live in rural and remote areas. By 2039 the number of people aged 65 + in rural areas will grow by 50%.Dementia and Stroke are more common in rural areas. Cancer is diagnosed later in those living in rural communities and people may not live as long due to this. People in rural areas may find difficulty accessing palliative care. As a partnership across four nations, we will find out and answer questions as to how care is and can be delivered and to research if there are new ways to deliver care Aims We want to improve palliative and end of life care for older people with dementia, stroke or cancer within the last year of life, living in rural and remote communities across the UK. In Phase 2 we will work with patients and carers to test ways of giving care and new ways of caring for people in the last year of life. Partnership Our 12-month partnership includes older people, carers, patients and public involvement and experience (PPIE), volunteers, social c
Background The rural population aged 65+ will grow by 50% by 2039. Using examples of dementia, stroke or cancer which have increased prevalence within older people in rural and remote areas and with lack of provision and access to palliative and end of life care, we will establish a partnership across the four nations to identify and answer key questions relating to models of care and service delivery and care interventions. Aims We aim to improve palliative and end of life care for older people with dementia, stroke or cancer within the last year of life, living in rural or remote communities across the UK. In Phase 2 we will evaluate identified current models and interventions and co-develop and test new models and interventions acceptable to rural populations. Partnership Our partnership brings together older people, carers, PPIE volunteers, social care providers, advocacy groups, clinicians, community nursing, hospices and palliative care services, commissioners, local and national
Academic
Liverpool John Moores University
L3 5AH
53,407
-2,975
Professor Mari Lloyd-Williams
Not Provided
Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
16
PB-PG-1111-26071
Optimising palliative care for older people in the community: development and evaluation of a new short term integrated service
NIHR (non-ODA)
Research
Complete
Research for Patient Benefit
Researcher Led
Research for Patient Benefit
£258 920
7 novembre 2013
6 mai 2016
People are living longer and increasingly die with frailty and escalating difficulties with their health. Palliative care is recommended to improve older people s and their carers quality of life, but uncertainty surrounds how to achieve this. This study aims to work with an NHS community trust to create and test a new service for frail older people living at home or in a care home. The new service is delivered by close working between specialists in palliative care such as a Macmillan Nurse, and primary and community services like general practitioners and district nurses. The study is in two parts. Part 1 builds ideas on the new service using a postal survey sent to 1200 bereaved relatives or carers of people aged over 75 years to find their preferences for care and personal goals. We then ask older people and carers, professionals providing services and members of voluntary groups about the results of the survey and the best ways to create the new service. Part 2 examines if we ar
Background People are living longer and dying with frailty and, for many, increasingly complex co-morbidities and health needs. Palliative care is advocated for older people to improve the quality of life, but with little evidence of effectiveness 4 5 6. This study intends to work with NHS staff in a community trust to develop and evaluate a new STIPC service for frail older people with complex needs living at home or in a care home. Short-term palliative care could be cost effective and appropriate because it relies on existing communityservices, but with additional shared support from specialist palliative care (SPC) services at points of actual or anticipated decline in wellbeing and uncertain outcome. Aims The study s primary aim is to develop and evaluate the STIPC service for frail older people living at home or in a care home. The service is delivered through integrated professional working (IPW) between SPC services and community nursing teams, and GPs and geriatricians as m
Government/NHS
Sussex Community NHS Foundation Trust
BN2 3EW
50,831
-0,114
Professor Catherine Evans
0000-0003-0034-7402
Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
MLTC
Award does not have an ODA Downstream Partner
17
16/02/17
Systematic review and meta-analysis of the effectiveness and cost-effectiveness of inpatient specialist palliative care in acute hospitals for adults with advanced illness and their caregivers
NIHR (non-ODA)
Research
Complete
Health and Social Care Delivery Research
Researcher Led
HSDR Researcher Led
£117 826
1 mai 2017
31 octobre 2018
Why are we doing this research? We are carrying out this research to try and find out if hospital palliative care teams (teams focussing on improving symptoms and quality of life) are useful and provide good value for money. Why is this research needed? There is an increased burden on healthcare internationally. This is because people are less likely to die in childhood and more likely to live longer. Despite attempts to reduce the cost of hospital care, it continues to increase. In addition, there has been a recent growth of palliative care teams in hospitals. What we don’t know is whether palliative care teams in hospital are useful in improving patients’ pain and other symptoms and whether they are good value for money. In addition we don’t know which part of the service delivered by palliative care teams in hospital is most useful. If we knew which parts of the service were most useful, we could concentrate on developing those elements. This may then improve care and reduce h
Background: The global burden of disease has increased with increasing longevity and reduced mortality. This change is placing considerable strain on healthcare systems with increases in healthcare costs observed globally, despite efforts to reduce acute hospital expenditure. Specialist palliative care in acute hospitals is common. Most adults die in hospitals and most die from advanced chronic illness. With an ageing population, the demand for specialist palliative care is likely to continue. Evidence shows that specialist palliative care improves clinical outcomes and quality of care, can reduce hospital costs, and help contain costs in the last year of life. A review of the evidence of the effectiveness and cost-effectiveness of specialist palliative care has the potential to aid the future development, funding and implementation of evidenced based inpatient specialist palliative care. Aim: To determine the effectiveness (on improving pain and other symptoms) and cost-effectiven
Government/NHS
King's College Hospital NHS Foundation Trust
SE5 9RS
51,468
-0,094
Dr Sabrina Bajwah
0000-0001-5338-8107
Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
18
NIHR135334
Developing palliative and end-of-life care research partnerships and capacity in the North West Coast of England
NIHR (non-ODA)
Research
Complete
Public Health Research
Commissioned
PHR Commissioned
£96 390
1 janvier 2022
30 juin 2023
Research is an important part of excellent care, with health and social care organisations involved in research activity known to provide better care. However, in the North West Coast area of England we know that research activity in the important area of palliative and end-of-life care is much lower than in other parts of the country. This is despite much higher needs than on average. It is important that we invest in research in North West Coast England to ensure that the particular needs of the populations in this area are properly taken account of, and that care is planned and provided to meet these needs in the best possible way. The purpose of this partnership is to bring together clinicians, health care organisations, researchers and the public to effectively plan important and high-quality research in palliative and end-of-life care that is relevant to North West Coast and more generally across the country. Over 18 months we will do three types of activity: First, we
BACKGROUND We want to build a broad palliative care research partnership across the North West Coast region between Universities, providers, patients and the public, and existing infrastructure such as the CRN and ARC. This will enable the delivery of high quality, practice relevant grant applications that focus on needs, especially those of our underserved populations. The North West Coast has high palliative care need (third highest prevalence in England) and historically low recorded NIHR research activity (second lowest research recruitment rate in England). There are known challenges to conducting research in palliative care such as identification and recruitment of populations, but also challenges of poorly established research infrastructure. Having an active, confident, sustainable palliative care research network across North West Coast will spotlight good research practice, build research capacity, and combat barriers to research. OBJECTIVES i)To develop a sustainable pal
Academic
Lancaster University
LA1 4YW
54,010
-2,786
Professor Catherine Walshe
0000-0002-4531-8608
Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
19
NIHR303695
Co-developing an Implementation Toolkit for Palliative Care in the Intensive Care Unit
NIHR (non-ODA)
Training
Active
NIHR Fellowships
Trainee Development
Doctoral Fellowship
£475 336
1 septembre 2024
31 août 2027
Improving palliative and end-of-life care in the Intensive Care Unit: what works and how do we put this into practice? Summary of the problem: The Intensive Care Unit (ICU) is a specialised ward for seriously ill patients. It can be distressing for patients and their family and involves difficult-to-manage symptoms, hard discussions, and emotional decisions. Although palliative care does include end-of-life care, they are not the same. Palliative care is an approach that can help ICU patients and their families towards comfort in times of uncertainty and distress. There are recommendations on how to provide palliative care in the ICU, but there are barriers to putting these into practice. There are palliative care needs unmet such as providing clear communication, managing difficult symptoms, and support in uncertainty. At the moment, there are no tools to help ICUs overcome these barriers or make best use of their strengths. What I aim to do: This work will develop a 'toolkit' to
Background Palliative and end-of-life care support is essential in Intensive Care Units (ICUs) given symptom burden, mortality rates, and uncertainty. Variations in palliative care provision, and continuing unmet patient, family, and healthcare professional (HCPs) needs, suggest an evidence-to-practice gap. Implementation strategies to address barriers to, and facilitators for, palliative care provision in ICUs have been reported. Mechanisms by which reported implementation strategies work are poorly understood. No guidance exists on how to translate knowledge of implementation factors (barriers, facilitators, strategies) into actionable steps for ICUs to improve palliative care outcomes. Evidence is absent on UK patient and family-perceived implementation factors for ICU palliative care. This Fellowship Programme will bridge these gaps, creating outputs for practical use, informing ICU palliative care and implementation science research communities. Aims To provide an evidenced-bas
Academic
University of Hull
HU6 7RX
53,772
-0,366
Dr Stephanie Meddick-Dyson
0000-0001-7032-6426
Award Holder
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
20
RP-PG-1210-12015
C-CHANGE: Delivering high quality and cost-effective care across the range of complexity for those with advanced conditions in the last year of life
NIHR (non-ODA)
Research
Complete
Programme Grants for Applied Research
Researcher Led
Programme Grants for Applied Research
£1 972 961
1 juin 2013
30 septembre 2018
Background: In England, the hospice movement has provided a model of excellent care (palliative care) for those with advanced disease. However, there are marked inequities in provision of this care across England. Those older or with non-cancer, for instance, are less likely to receive excellent care. There are also major geographical variations in NHS provision (from &pound;186 to &pound;6,213 per person across different Primary Care Trusts (3)), resulting in often poor match between the needs of a patient/family, the resources provided to meet those needs, and the improvement in symptoms/quality of life achieved. Purpose: This research develops and tests a system (a casemix classification) to accurately capture the complex needs of patients with advanced disease, to better understand and quantify those needs, and to fairly allocate resources to meet them. It identifies ways to measure the actual improvements in symptoms/quality of life which patients and families experience, so that
Aim: To develop and validate a patient-centred, nationally applicable casemix classification for adult palliative care provision, which i) validly and reliably reflects patient and family needs, ii) captures patient complexity across different advanced conditions and settings, and iii) enables the delivery of better quality and more efficient care in the last year of life, linked to appropriate outcomes and indicators of quality of care. Objectives: 1. To refine and test a patient-centred palliative care casemix classification, based on individual patient and family needs, for adults with both cancer and non cancer conditions in the last year of life. 2. To prospectively validate this palliative care casemix classification in England by testing how accurately the classes capture individual patient and family needs, and resource use, over time and across conditions and settings. 3. To refine and test a summary measure of patient complexity which accurately reflects patient and fami
Government/NHS
King's College Hospital NHS Foundation Trust
SE5 9RS
51,468
-0,094
Professor Fliss Murtagh
0000-0003-1289-3726
Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions/8. Health and Social Care Services Research
7.2 End of life care/8.1 Organisation and delivery of services
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
21
NIHR135115
The Yorkshire & Humber Palliative Care Research Network: Addressing Inequalities Across All Ages
NIHR (non-ODA)
Research
Complete
Health Technology Assessment
Commissioned
HTA Commissioned
£99 933
1 mars 2022
29 février 2024
Background: Yorkshire and the Humber is the largest region in the UK (pop. > 6 million). It included districts with some of the worst health outcomes in England. It is ethnically diverse and has some of the most socio-economically deprived wards in England. Recruitment into palliative and end of life care studies is very uneven, with high recruitment around existing academic centres (Leeds, Sheffield, Hull), but little or no activity elsewhere - especially in more socioeconomically deprived and/or ethnically diverse populations (Kirklees, Rotherham, Barnsley, Bradford, Doncaster, North and North-East Lincolnshire, coastal Yorkshire. Our aim: We will address inequalities in palliative and end of life care research across the region and among all ages, by working with a range of partners in those areas which are new to research and/or have less often recruited people into palliative care studies. How we will do this: We will do this by first developing a Y&H Palliativ
Background: Yorkshire and the Humber (Y&H) is the largest UK region (pop. > 6 million). It included districts with some of the worst health outcomes in England, is ethnically diverse, and has some of the most socio-economically deprived wards in England. Recruitment into palliative and end of life care studies is very uneven, with high recruitment around existing academic centres (Leeds, Sheffield, Hull), but little or no activity elsewhere - especially in more socioeconomically deprived and/or ethnically diverse populations (Kirklees, Rotherham, Barnsley, Bradford, Doncaster, North and North-East Lincolnshire, coastal Yorkshire). Aim and objectives: To address inequalities in palliative and end of life care research across Y&H and among all ages, through: i) increasing research capacity in research naive areas, and ii) delivering wider engagement in research, more diverse recruitment into palliative care studies, and thus better evidence to improve care. Methods: Wor
Academic
University of Hull
HU6 7RX
53,772
-0,366
Professor Fliss Murtagh
0000-0003-1289-3726
Chief Investigator
Generic Health Relevance
None/None/8. Health and Social Care Services Research/7. Management of Diseases and Conditions
5.9 Resources and infrastructure (treatment development)/6.9 Resources and infrastructure (treatment evaluation)/8.5 Resources and infrastructure (health services)/7.4 Resources and infrastructure (disease management)
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
22
NIHR135291
Palliative and End-of-Life Care Research Partnership for Northern Ireland
NIHR (non-ODA)
Research
Complete
Health Technology Assessment
Commissioned
HTA Commissioned
£68 305
1 mars 2022
28 février 2023
Why does NI need a Palliative and End-of-Life Care Research Partnership? In Northern Ireland a high number of people need help managing serious long-term illnesses (palliative care) and help at the end of their lives. Compared to the rest of the UK, research on how to help people in these situations has been rarely funded in Northern Ireland in the past. The National Institute of Health Research (NIHR) is the UK’s largest funder of health and social care research. The NIHR is funding a Palliative & End-of-Life Research Partnership to support researchers in Northern Ireland. With help from the Partnership, researchers will develop high quality research projects that could be funded by NIHR. The result will be more research of a higher quality in Northern Ireland helping people with long-term illnesses or at the end of their lives. Who will be in the partnership? We want to do research that will help to meet the real needs of people. The partnership will include patients; relati
Background. The National Institute for Health Research (NIHR) call for Research Partnerships is designed to build research capacity in palliative and end of life care; and to ensure that NIHR research is conducted in areas of greatest need and where there are historically low levels of research. Northern Ireland (NI) has high levels of need, with an estimated 11,300 people requiring palliative care dying each year but nearly 3,000 of these not accessing that care. The 2019/20 National Audit of Care at the End of Life reports a summary score of 7.4/10 for the specialist palliative care workforce in England and Wales, compared to just 5.1/10 in NI. This reflects differences in services such as access to seven-days-a-week, face-to-face, specialist palliative care service; and inclusion of end of life care training in mandatory training programmes. NI also has low levels of research: A 2018 review of palliative and end of life care research in Ireland found: most was observational; funding
Academic
The Queen's University of Belfast
BT7 1NN
54,585
-5,934
Dr Peter O'Halloran/Dr Clare Mc Veigh
0000-0002-0022-7331/0000-0001-9691-6766
Chief Investigator/Joint Lead Applicant
Generic Health Relevance
8. Health and Social Care Services Research/7. Management of Diseases and Conditions
8.5 Resources and infrastructure (health services)/7.4 Resources and infrastructure (disease management)
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
23
NIHR303223
Trajectories of Palliative Care Need amongst People with Multiple Long-Term Conditions - Recommendations for Service Innovation
NIHR (non-ODA)
Training
Active
NIHR Fellowships
Trainee Development
Advanced Fellowship
£1 281 040
1 janvier 2024
31 mars 2030
Background Palliative care delivers physical, emotional, social and practical support for people who are near to the end of their lives. Despite being a human right, many people who need palliative care do not receive it. Nowadays, most people live with and die from multiple long-term conditions (MLTC) (a combination of diseases for which there is no cure e.g. diabetes, lung disease, depression). Being old or frail, living in poverty or being from an ethnic minority all increase your chance of having multiple long-term conditions. These factors also make it less likely that someone will receive palliative care. Finding a good way to provide palliative care for people with MLTC could help reduce inequalities and improve end of life experiences for many people. What I aim to do We do not know what people with MLTC need as they approach the end of their lives, how needs change as they get closer to death or how their needs should be met. This research will help to answer these questions
Background Palliative care, the multidisciplinary holistic management of patients with life-limiting illness (4-6), is a human right (7) and should be provided on the basis of need not prognosis. Inequitable access is an ongoing challenge. Most people will live with, and die from multiple long-term conditions (multimorbidity) (MLTC-M) yet this population are especially likely to miss out on palliative care (8). MLTC-M is frequently the all-pervading feature of populations who experience health inequity. Because of its associations, tackling appropriate palliative care provision for those with MLTC-M is key to also tacking inequitable access amongst people who are older, living in poverty, from minority ethnic groups and living with frailty (9,10). Research Questions What are the palliative care needs of patients with MLTC-M and how do those needs change, as death approaches? What range of interventions are required to meet the palliative care needs of people with MLTC-M and what ro
Academic
The University of Newcastle upon Tyne
NE1 7RU
54,980
-1,616
Dr Felicity Dewhurst
0000-0001-9648-5329
Award Holder
Generic Health Relevance
7. Management of Diseases and Conditions/8. Health and Social Care Services Research
7.2 End of life care/8.1 Organisation and delivery of services
MLTC
Award does not have an ODA Downstream Partner
24
NIHR131800
Integrating Palliative Care and Heart Failure: a Realist Synthesis (PalliatHeartSynthesis)
NIHR (non-ODA)
Research
Complete
Health and Social Care Delivery Research
Researcher Led
HSDR Researcher Led
£255 440
1 septembre 2021
28 février 2023
Heart failure is an illness that mostly affects older people (those over the age of 65), whereby the heart is not able to pump blood sufficiently around the body to meet functional demands. People with an advanced stage of heart failure can become frequently unwell with poor quality of life despite advanced medical therapies. They would therefore benefit from the integration of palliative care. Palliative care has traditionally been associated with the care of patients with advanced cancer, but its benefits are increasingly being recognised and used in other chronic life limiting illnesses, including heart failure. Palliative care can do much to alleviate suffering for people with heart failure as it focuses on adding to patient care by treating the whole person – their physical, psychosocial, and spiritual needs. Thus, improving quality of life for both the patient and their loved ones. However, poor integration of palliative care into the management of heart failure is an ongoing
Background Heart Failure (HF) is referred to internationally as a modern-day epidemic, with prevalence rates similar to the leading forms of cancer. At least 5% of those with advanced HF (defined as New York Heart Association (NYHA) class III and IV) in the United Kingdom (UK) are over 75 years old, rising to 22% in those = 85 years, with highly complex healthcare needs. This puts considerable burden on overstretched health service resources with an estimated 1–2% of the NHS budget spent on HF. Up to 70% of advanced HF costs relate to hospitalisation, with 80% of those hospitalised aged = 65 years. Patient burden is also considerable, involving debilitating emotional and physical symptoms which severely impact on quality of life (QoL) for patients and caregivers. Emerging evidence demonstrates improved QoL, reduced symptom burden, and health service costs when Integrated palliative care (PC) and HF interventions are implemented. Integrated PC aims to achieve continuity of care by
Academic
The Queen's University of Belfast
BT7 1NN
54,585
-5,934
Dr Tracey McConnell/Professor Joanne Reid
0000-0003-1292-8597/0000-0001-5820-862X
Chief Investigator/Joint Lead Applicant
Cardiovascular
7. Management of Diseases and Conditions/8. Health and Social Care Services Research
7.2 End of life care/8.1 Organisation and delivery of services
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
25
NIHR135304
Developing the UK Collaborative Paediatric Palliative cAre Research (CoPPAR) Network
NIHR (non-ODA)
Research
Complete
Health Technology Assessment
Commissioned
HTA Commissioned
£86 336
1 janvier 2022
30 juin 2023
Why is this study needed? There are growing number of children living with medical conditions that will threaten or shorten their lives and around 4500 babies, children and teenagers in the UK will require end of life care each year. There are increasing numbers of specialist palliative care services and children’s hospices in the UK, but there is little research evidence to tell us how care for these children and families should be delivered, for example how to manage distressing symptoms. Undertaking research in palliative care settings is challenging because the numbers of children and young people at any one site or with any one condition are relatively small, and many of the services are voluntary rather than NHS funded so do not have dedicated research departments. What are we aiming to achieve? We are aiming to develop a network of academics, clinical teams (children’s hospices or NHS palliative care teams) that will work together to share experiences and expertise to improve
Background There are growing numbers of children and young people living with conditions which may threaten or shorten their lives and 4500 children die every year in the UK. There are now 53 children’s hospices and ~ 10 NHS hospital based palliative care teams but the research evidence base underpinning this care is limited. There is an urgent need to increase the quality and quantity of research in paediatric palliative care and to do this we need to work in partnership with the paediatric palliative care (PPC) sector to increase the research capacity and delivery. Aims and objectives Aim: to develop a collaborative UK wide paediatric palliative care research network (CoPPAR) that will deliver national high-quality research studies, education and build research capacity Objectives: 1. to work with seven paediatric palliative care sites (hospice and hospital based) to develop research readiness using methods that can be scaled up to the other hospices and NHS paediatric palli
Academic
University of York
YO10 5DD
53,948
-1,054
Professor Lorna Fraser
0000-0002-1360-4191
Chief Investigator
Generic Health Relevance
8. Health and Social Care Services Research/7. Management of Diseases and Conditions
8.1 Organisation and delivery of services/7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
26
NIHR204588
PROMISE - The Potential for ROutine Data to Monitor and Reduce InequalitieS in End-of-life Care
NIHR (non-ODA)
Research
Complete
Programme Development Grants
Researcher Led
Programme Development Grants
£149 696
1 avril 2023
30 juin 2024
Half a million people die each year in England. It is estimated that three quarters would benefit from palliative care; that is: patient-centred care in advanced disease. This number is increasing each year. We know that inequalities exist, with some groups (e.g. people living in deprived neighbourhoods) receiving less good end-of-life care. We know little about other sources of inequality, e.g. ethnicity, or how different types of inequality interact. Big data can be a powerful way to examine care and inequalities. Big data is data collected automatically as part of patients records. Big data allows researchers to examine large and diverse populations, and has the advantage of not requiring additional data collection from patients approaching the end of life. Our goal is to develop a research programme that uses big data to examine and improve inequalities in end-of-life care. Before this can be done, there are some key questions to explore through this Programme Development gra
500,000 people die each year in England, and it is estimated that three quarters would benefit from palliative care. The number of people who need palliative care will increase 40% by 2040. There are known inequalities in care received by people near the end of life. For example, people with lower socioeconomic position are less likely to receive palliative care, and less likely to die at home. Some inequalities, for example associated with dying in hospice, have increased over time. Other potential inequalities in end-of-life care, for example associated with ethnicity, are much less well understood. To improve care for dying people, we must understand (i) current inequalities in care and outcomes, and (ii) how to reduce these. Our future goal is to develop a programme of research to identify and address inequalities in palliative and end-of-life care through innovative use of routine data and policy engagement. This Programme Development grant aims to address key gaps in our knowl
Government/NHS
King's College Hospital NHS Foundation Trust
SE5 9RS
51,468
-0,094
Professor Katherine Sleeman
0000-0002-9777-4373
Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
27
NIHR135250
Building multi professional UK partnerships and networks to improve access to palliative care for people experiencing homelessness
NIHR (non-ODA)
Research
Complete
Public Health Research
Commissioned
PHR Commissioned
£96 885
1 février 2022
31 juillet 2023
Background People experiencing homelessness often have very poor health and don’t access healthcare in the same way as housed people. Many people experiencing homelessness die at a young age, in their mid-40s, and there often isn’t much planning around the care they receive at the end of life. Palliative care services don’t usually support this group as it’s often hard to know when the right time for palliative care support to begin would be. This group may have quite different needs to people that palliative care services might support. Because its hard to know how best to support someone experiencing homelessness towards the end of their life, a lot of different professionals need to be involved. This doesn’t often happen. For people who live in homeless hostels, staff working there are usually their main source of support, but they have no healthcare training. In our research, our work as clinicians or people who support those facing homelessness, we know that people are doing e
Background People experiencing homelessness have high rates of multi-morbidity and age related conditions at a young age and die young. The lack of palliative care support and appropriate places of care means very unwell people with complex problems are often supported by homelessness staff, with hospitals used instead of more appropriate community support. In order for people affected by homelessness to receive high quality care, multi-professional input is required, but rare. There is increasing awareness across the health and social care sector of a need to improve access to palliative care for this group. However, no central network exists whereby those with clinical, research or lived experience can share ideas, resources and learning to explore and reduce current inequity. Aims: •Create a sustainable partnership of practitioners, researchers and people with lived experience of homelessness to drive enthusiasm for research, promote shared learning and a multidisciplinary app
Non-Profit/Charity
Marie Curie Cancer Care
SE1 7TP
51,488
-0,124
Dr Briony Hudson
0000-0002-2907-1764
Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Social Care
Award does not have an ODA Downstream Partner
28
NIHR159167
A cluster randomized controlled trial of online Acceptance and Commitment Therapy (ACT) training to improve mental wellbeing in staff caring for terminally ill people and their caregivers.
NIHR (non-ODA)
Research
Contracted
Efficacy and Mechanism Evaluation
Commissioned
EME Commissoned
£1 389 164
1 février 2025
29 février 2028
Being a healthcare worker is stressful. Staff who care for people with a serious illness that will lead to death (palliative care) are at higher risk of stress than other healthcare staff. Palliative care staff care a lot about their work. Their care for others can put them at high risk of poor mental wellbeing. There are many challenging situations that these staff face. These include providing end of life care to a young person; supporting a dying parent; supporting people struggling to cope with grief; caring for people with complicated symptoms; and caring for people similar in age or circumstances to themselves. Palliative care staff face death and grief on a daily basis. During the COVID pandemic, many of these workers felt tired and worn out, and the number of staff needing to take time off work grew. Poor staff wellbeing is a problem that can lead to sickness and poor care. Patients and families need compassionate care at the end of their lives provided by staff working to
Background: Whilst healthcare workers are known to be at risk of poor wellbeing, those that work in palliative care have worse wellbeing and face exposure to unique stressors. Acceptance and Commitment Therapy (ACT) is a form of cognitive behavioural therapy that uses acceptance, mindfulness, and behavioural psychology to help people engage in the things that matter to them, even in challenging situations. ACT has good evidence for efficacy in occupational stress, though this is less clear for health professionals. Our previous research was a pilot feasibility trial of an online ACT intervention specifically designed for palliative care staff: RESTORE. RESTORE was shown to be feasible, acceptable and improved wellbeing. Research question: Does RESTORE improve palliative care staff wellbeing compared to usual support, and is this mediated by improvement in psychological flexibility? Methods, including justification of study design: A parallel arm cluster randomised controlled trial w
Academic
The University of Edinburgh
EH8 9YL
55,948
-3,187
Dr Anne Finucane/Dr David Gillanders
0000-0002-3056-059X/0000-0003-4071-4211
Joint Lead Applicant/Chief Investigator
Mental Health
6. Evaluation of Treatments and Therapeutic Interventions
6.6 Psychological and behavioural
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
29
NIHR128799
End of life care in care homes: supporting the workforce and reducing hospitalisations
NIHR (non-ODA)
Research
Complete
Health and Social Care Delivery Research
Researcher Led
HSDR Researcher Led
£540 417
1 octobre 2020
31 juillet 2023
Up to 50% of care home residents in the UK die within 6 months of admission. Care homes provide personal care and support to people aged 65 and over, and may also provide nursing care. Residents are often frail and have lots of complex health problems. Despite their needs, residents often don’t get access to end of life care from hospice teams, and so may experience unnecessary and distressing symptoms at end of life. This is unjust: older people in residential care should receive the same high quality of palliative care which is provided in the community. Palliative care is specialist support for people with life-limiting illnesses, and includes physical, emotional and spiritual care for the patient and their family, Recent work conducted in Australia tested a new way to provide specialist palliative care to care home residents. The new approach is called ‘Palliative Care Needs Rounds’ (or ‘Needs Rounds’). Needs Rounds are monthly staff meetings where up to 8 residents are priori
Research question How can an evidence based model of improving end of life care in care homes be adapted for use in the UK? Background Palliative Care Needs Rounds (hereafter Needs Rounds) are monthly hour-long clinical meetings between a specialist palliative care clinician and care homes. They focus on residents most likely to die without a plan in place, and provide staff with case-based education to develop end of life skills to manage symptoms and care needs, promote anticipatory planning through discussion of bio-psycho-social needs (e.g. power of attorney and prescribing) and trigger case conferences and palliative care clinical work. Needs Rounds were developed and tested in Australia in a stepped wedge randomised control trial (n=1700 residents). The trial demonstrated substantial cost savings due to significantly decreased number and duration of admissions to hospital, residents had improved quality of death/dying, and staff improved in their capability to provide end o
Academic
University of Stirling
FK9 4LA
56,145
-3,920
Professor Liz Forbat
0000-0002-7218-5775
Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions/7. Management of Diseases and Conditions
7.2 End of life care/7.3 Management and decision making
Social Care
Award does not have an ODA Downstream Partner
30
NIHR135278
North East Palliative and End of Life Care Collaborative
NIHR (non-ODA)
Research
Complete
Health and Social Care Delivery Research
Commissioned
HSDR Commissioned
£96 637
1 juin 2022
31 décembre 2023
When death is approaching, health and social services aim to help people to come to terms with illness, manage pain and other issues, and have a comfortable death. End-of-life care needs are greater, and more complex in poor areas. Providing services is often difficult in remote or rural areas. The North East has all these problems, across country and coast, cities and industrial zones. Some of these areas are amongst the poorest in Europe. Despite all these challenges, end-of-life care research in the North East is not well developed. This is important, because research plays a role in promoting high quality care, and shaping new services. Our proposal tackles that gap, with a plan to grow palliative and end-of-life care research in an area where patients and families are likely to benefit. Our aim is to develop strong and lasting links between researchers and the people who provide palliative and end-of-life care, and to encourage more people into this area of research. We will
Background The North East is one of the most disadvantaged areas of England. End-of-life care needs are shaped by high levels of disability, physical and mental ill-health, in some of the most extreme urban/rural/coastal contexts. To support innovation and evidence-based practice, a critical mass of palliative and end-of-life care research expertise is needed. This is missing in the North East - our application begins to address that gap. Aims and programme of work Our aim is to develop research and capacity in the North East to enhance local and national palliative and end-of-life care. Our objectives are to: • Develop a self-sustaining research culture in North East palliative and end-of-life care • Evaluate our data infrastructure and identify areas for development • Develop end-of-life research collaborations around older age, frailty, multiple long-term-conditions and inequalities • Convene a diverse patient and public advisory group and identify training needs • Su
Academic
University of Newcastle upon Tyne
NE1 7RU
54,980
-1,616
Dr Katherine Frew/Professor Barbara Hanratty
Not Provided/0000-0002-3122-7190
Chief Investigator/Joint Lead Applicant
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
31
NIHR202326
Rapid evaluation of the care home response to the need for palliative and end-of-life care during the COVID-19 pandemic: integration, communication and workforce resilience (CovPall_CareHome)
NIHR (non-ODA)
Research
Complete
Policy Research Programme
Researcher Led
Policy Research Programme
£181 764
1 janvier 2021
30 juin 2022
COVID-19 has had a devastating impact on care homes, their residents and families, and staff. Over 20,000 care home residents in England have died from COVID-19 to date, and many more have experienced distressing symptoms. Palliative care alleviates physical and psychological distress for people with serious illness, and can improve bereavement outcomes for families. However, providing high-quality palliative and end-of-life care in care homes has been particularly challenging during COVID-19. This is because older people with COVID-19 can deteriorate rapidly and unpredictably, because wearing Personal Protective Equipment (PPE) makes communication harder (especially for people with dementia), and because visiting restrictions worsen distress. In addition, care home staff faced challenges in accessing advice from healthcare teams and decision making. The aim of this research is to understand the provision of palliative and end-of-life care in care homes during the COVID-19 pandemic, a
Background: COVID-19 has had a devastating impact on care homes, their residents and families, and staff. Over 20,000 care home residents in England have died from COVID-19 to date. Many more have experienced symptoms and distress. Palliative care is an essential component of the pandemic response. However, there has been limited examination of palliative and end-of-life care provision in English care homes during COVID-19, or strategies to improve this during subsequent pandemic peaks. Aim: To examine the response of care homes in England to meet the rapidly increasing need for palliative and end-of-life care for residents during the COVID-19 pandemic, and make recommendations for policy. Objectives: 1. To describe the response of care homes to palliative and end of life care needs during the COVID-19 pandemic, and the experiences, preparedness and impact on the workforce. 2. To explore in-depth the challenges and facilitators to providing palliative and end of life care in care hom
Academic
King's College London
SE1 8WA
51,505
-0,113
Professor Catherine Evans/Professor Katherine Sleeman
0000-0003-0034-7402/0000-0002-9777-4373
Joint Lead Applicant/Chief Investigator
Infection
7. Management of Diseases and Conditions
7.2 End of life care
COVID-19 1B/Social Care
Award does not have an ODA Downstream Partner
32
DRF-2013-06-001
Minimising and managing missing data in palliative care clinical trials.
NIHR (non-ODA)
Training
Complete
NIHR Fellowships
Trainee Development
Doctoral Research Fellowship
£275 038
1 janvier 2014
28 février 2018
Participants in palliative care trials may be too unwell to provide all the information required. Such 'missing data' are not completely avoidable and reduce the precision of results. There are standard approaches to managing missing data, but the optimal methods for palliative care studies are unknown. I will explore the views of individuals involved in research, on how to minimise data loss. Subsequently different approaches to managing missing data will be tested using trial datasets. I aim to provide frameworks for minimising and analysing missing data that will inform trial design, leading to more accurate results and better patient care.
drafted
Academic
University of Hull
HU6 7RX
53,772
-0,366
Dr Jamilla Hussain
0000-0002-3644-6480
Award Holder
Generic Health Relevance
7. Management of Diseases and Conditions/8. Health and Social Care Services Research
7.2 End of life care/8.4 Research design and methodologies
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
33
NIHR303241
Understanding and addressing inequalities in access to palliative care for those with lung disease; does the inverse care law apply? (LungPal-Equity study)
NIHR (non-ODA)
Training
Active
NIHR Fellowships
Trainee Development
Doctoral Fellowship
£460 355
1 janvier 2024
31 décembre 2027
Background: Lung disease, including lung cancer and COPD, leads to over 70,000 deaths in the UK per year. These illnesses cause distressing symptoms such as breathless and pain. Palliative care can help improve symptoms and support patients and their families from the time of diagnosis until end-of-life. Research shows that most people prefer to avoid unnecessary hospital admissions in their last few months of life and to die at home. Palliative care can help people to plan for the future, including avoiding admission to hospital. People living in poorer areas are more likely to have worse health and a higher need for healthcare. However, those living in poorer areas are the least likely to receive high -quality healthcare, this is known as the 'inverse care law'. In general, people in poorer areas are less likely to receive palliative care, resulting in worse symptoms and being more likely to be admitted to and die in hospital. People living in poorer areas are more likely to have se
Background 'Health inequalities' are differences in health between people in different groups in society. People in lower socio-economic groups experience worse health, but despite having higher healthcare needs, they are paradoxically less likely to receive care (the 'Inverse care law'). Palliative care supports people with life-limiting illness; ameliorating symptoms and empowering them to plan for the future (e.g., avoiding hospital admissions at end-of-life). Palliative care is both a human and legal right; yet, generally, those living in deprived areas are less likely to receive it. Lung diseases (e.g., lung cancer and COPD) are more common in deprived areas; they cause particularly burdensome symptoms proven to benefit from palliative care. This study will examine inequalities in access to palliative care, using lung disease as an exemplar, to identify solutions that can be implemented into policy and practice. Aim: To identify if, and to what extent, inequalities exist in a
Government/NHS
North Tees and Hartlepool NHS Foundation Trust
TS24 9AH
54,702
-1,228
Dr Donna Wakefield
0000-0002-6811-1255
Award Holder
Respiratory/Cancer and neoplasms
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
34
NIHR135171
Research partnership on functional loss and rehabilitation towards the end of life
NIHR (non-ODA)
Research
Complete
Health Technology Assessment
Commissioned
HTA Commissioned
£92 179
1 janvier 2022
31 décembre 2022
WHY IS REHABILITATION IMPORTANT IN PALLIATIVE CARE? ‘Functional loss’ describes a person becoming unable to do the everyday activities they would like or need to do. These activities might include simple things like bathing and dressing, or more complex things like going shopping or managing bills. Life-limiting illnesses (like cancer, chronic lung disease, and dementia) and some symptoms (like pain, breathlessness, and fatigue) limit the everyday tasks people are able to do. As a result, functional loss is a common source of suffering for patients and their families. Rehabilitation aims to support a person to carry out everyday activities that have been affected by illness. This should be an important part of providing good palliative care. However, in practice, not everyone has equal access to rehabilitation. Where resources are limited, these services have often been stopped or not provided. This is partly due to a lack of high-quality research about the best way to deliver this
BACKGROUND Functional loss is defined as an inability to undertake necessary or desired tasks for everyday living. Life-limiting illness(es) and accompanying symptoms (e.g. pain, fatigue, breathlessness) commonly contribute to functional loss; a common source of suffering for patients and families. Rehabilitation is a set of interventions designed to address functional loss. It is recognised as an important part of palliative care, as it can improve quality of life and cut ongoing care costs. However, not everyone has equal access to rehabilitation. In the face of limited life expectancy, or uncertain ability to benefit from interventions, palliative rehabilitation services are often absent. This can be addressed through high-quality research around optimal models of rehabilitation. Such research is methodologically challenging and requires multi-disciplinary and cross-speciality collaboration. AIM & OBJECTIVES We aim to establish and grow a research partnership across divers
Academic
King's College London
SE1 8WA
51,505
-0,113
Professor Rowan Harwood/Professor Matthew Maddocks
0000-0002-4920-6718/0000-0002-0189-0952
Joint Lead Applicant/Chief Investigator
Generic Health Relevance
8. Health and Social Care Services Research/7. Management of Diseases and Conditions
8.5 Resources and infrastructure (health services)/7.4 Resources and infrastructure (disease management)
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
35
12/130/47
Evaluation of the clinical and cost-effectiveness of Short-term Integrated Palliative Care Services (SIPC) to OPTimise CARE for people with advanced longterm Neurological conditions (OPTCARE Neuro)
NIHR (non-ODA)
Research
Complete
Health and Social Care Delivery Research
Commissioned
HSDR Commissioned
£1 264 697
1 avril 2014
31 janvier 2019
Longterm neurological conditions (LTNCs) are a group of progressive disorders, affecting approximately 10 million people in the UK. People with LTNCs commonly have physical disabilities affecting arms, legs, bladder, bowel, eyesight, or speech, for example, plus other intractable symptoms including pain spasms and fatigue. In addition, there is often a double burden of psychological distress or cognitive dysfunction. Over one third of people with LTNCs are estimated to need help with daily living, and nearly one million informal carers support someone with a neurological disease. Earlier phases of neurological illness can be managed well with medical treatments, rehabilitation, care and support. However, some diseases are or become invariably progressive. In the later stages those affected experience increased problems with greater need for personal, social, psychological and spiritual support. Care needs for those severely affected by LTNCs rise sharply once the disease reaches more
DESIGN: Follows MRC guidance for evaluation of complex interventions: (i) set up, feasibility, mapping; (ii) randomised pragmatic trial of Short-term Integrated Palliative Care (SIPC) offered from a Multiprofessional Palliative Care Team compared to best usual care; (iii) a qualitative component, explores change process, how SIPC might be improved, interprets quantitative results, plus survey of health professionals; (iv) economic modelling. Methods build on those tested in our phase II randomised trial for MS patients, and longitudinal, economic and qualitative studies with patients and caregivers severely affected by these and other longterm conditions. SETTING: Five areas from across the UK; South London, Cardiff, Brighton and Sussex, Liverpool and Nottingham, all with palliative care, neurology/rehabilitation services and sufficient catchment population - representative of people with longterm neurological conditions in mixed urban, suburban and rural areas. TARGET POPULATION
Academic
King's College London
SE1 8WA
51,505
-0,113
Professor Irene Higginson
0000-0002-3687-1313
Chief Investigator
Neurological
8. Health and Social Care Services Research/8. Health and Social Care Services Research
8.1 Organisation and delivery of services/8.2 Health and welfare economics
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
36
PB-PG-0816-20017
ICaRAS (Intravenous Iron for Cancer Related Anaemia Symptoms) – A Feasibility Study of Intravenous Iron Therapy for Anaemia in Palliative Cancer Care
NIHR (non-ODA)
Research
Complete
Research for Patient Benefit
Researcher Led
Research for Patient Benefit
£214 510
2 avril 2018
31 janvier 2022
Aim: To determine the feasibility of improving anaemia in patients with incurable cancer by iron supplements. Background: Anaemia ( low red blood count) is common in patients with incurable cancer. It means that cells in the body cannot get enough oxygen, and significantly worsens the fatigue that is associated with the illness. Ability to carry out even basic daily activities is reduced, and so quality of life is further restricted. There is no specific treatments at present. Only severe anaemia is treated with blood transfusions because of limited availability and high expense. Our study looks to see whether an iron infusion (a method to get iron into the blood quicker) can help improve anaemia and tiredness in patients with incurable cancer. New iron infusions can be given safely and offer potential treatment where at present no treatment is given. Iron infusion works by replacing iron in the body that became low from cancer. With this treatment the body can then make new red blo
Background: Fatigue is the most common symptom in palliative care patients occuring in up to 80% of patients (Radbruch 2008). The causes of fatigue are multi-factorial. Anaemia is an important and common cause of fatigue, occurring in over two-thirds of patients in palliative care (Dunn 2003). Up to 50% of this anaemia may be related to iron deficiency (Robertson 2009). Correcting anaemia improves quality of life (Crawford 2002). Currently neither fatigue nor anaemia in palliative cancer care have specific treatments, other than treating the underlying cancer when possible. Only severe anaemia is addressed and here the mainstay of treatment is red blood cell transfusion, due to cost, limited supply and potential complications. Erythropoietin cannot be given to patients not receiving chemotherapy because of an increased risk in mortality (Bohlius 2009). New intravenous iron products are safe to deliver and offer potential for an effective treatment that can be applied where currently no
Government/NHS
Nottingham University Hospitals NHS Trust
NG5 1PB
52,991
-1,158
Mr Austin Acheson
0000-0002-6935-5227
Chief Investigator
Blood/Cancer and neoplasms
6. Evaluation of Treatments and Therapeutic Interventions/7. Management of Diseases and Conditions
6.1 Pharmaceuticals/7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
37
13/180/04
Medically assisted hydration for adult palliative care patients
NIHR (non-ODA)
Research
Complete
Health Technology Assessment
Commissioned
HTA Incentive Scheme (Cochrane)
£2 500
1 février 2014
30 avril 2014
Background It is common for palliative care patients to have reduced fluid intake during their illness. Management of this condition includes discussion with the patient, family and staff involved, and may include the provision of fluids with medical assistance. This can be performed using a small plastic tube inserted into a vein or under the skin, or via a tube inserted into the stomach. It is unknown whether this treatment helps people to feel better or live longer. Study characteristics We searched the international literature for randomised controlled trials looking at the effects of medically assisted hydration in adults receiving palliative care. Randomised controlled trials allocate patients to one of two or more treatment groups in a random manner and provide the most accurate information on the best treatment. We conducted the searches in April 2013 and March 2014. Key results and quality of evidence We found only six studies looking at this issue. The studies did no
Background Many palliative care patients have reduced oral intake during their illness. The management of this can include the provision of medically assisted hydration with the aim of prolonging the life of a patient, improving their quality of life, or both. This is an updated version of the original Cochrane review published in Issue 2, 2008, and updated in February 2011. Objectives To determine the effect of medically assisted hydration in palliative care patients on their quality and length of life. Search methods We identified studies by searching the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE, CINAHL, CANCERLIT, Caresearch, Dissertation abstracts, SCIENCE CITATION INDEX and the reference lists of all eligible studies, key textbooks and previous systematic reviews. The date of the latest search conducted on CENTRAL, MEDLINE and EMBASE was March 2014. Selection criteria All relevant randomised controlled trials (RCTs) or prospective cont
Academic
Cochrane Pain, Palliative and Supportive Care Group
OX3 7LJ
51,750
-1,215
Dr Phillip Good
Not Provided
Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
38
NIHR135312
Multi-sectoral partnership building in the South West Peninsula: palliative and end-of-life care research in rural, coastal and low-income communities
NIHR (non-ODA)
Research
Complete
Public Health Research
Commissioned
PHR Commissioned
£95 273
1 janvier 2022
31 mars 2023
What do we want to improve? The South West of England (Cornwall, Devon, Dorset) has specific challenges, with high levels of poverty and a rapidly aging population in its coastal and rural communities. South West communities have exciting ideas and projects to enable low-income and other communities to support each other at the end of life, but to date have not benefitted from local palliative care research or evaluations of their projects. Who is our proposed South West partnership? We will create a strong partnership with the potential to conduct high quality research reflecting local needs. The evidence it produces will be important for other rural and coastal communities with low-income populations. The lead is from King’s College London with experience to share in palliative care research. The co-lead is from Exeter University and focuses on health research in low-income communities. The partnership includes Plymouth University, the voluntary health sector (all 7 regional h
Background The South West Peninsula (Cornwall, Devon, Dorset) has the highest proportion of over 65’s (24.2%), highest projected population growth (15.1%), and 0% conurbation. The Chief Medical Officer identified coastal populations as having the worst health outcomes in England. The Peninsula is the only rural population in England with greater economic deprivation than urban areas. Despite innovation among communities to provide support those with health and social care needs, there has not been research to evaluate palliative care interventions. The Peninsula is 5th lowest recruiter to palliative care studies among the 15 Clinical Research Networks. Aims and objectives Our proposed partnership spans academia, all 7 local hospices, Clinical Research Network, Research Design Service, Marie Curie, social services and voluntary community sectors to enable step-change to a sustained research-active regional partnership. We convened partners to jointly appraise research needs, and co
Academic
King's College London
SE1 8WA
51,505
-0,113
Professor Richard Harding/Ms Lorraine Hansford
0000-0001-9653-8689/0000-0002-8795-117X
Chief Investigator/Joint Lead Applicant
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
39
13/180/03
Medically assisted nutrition for palliative care in adult patients
NIHR (non-ODA)
Research
Complete
Health Technology Assessment
Commissioned
HTA Incentive Scheme (Cochrane)
£2 500
1 février 2014
30 avril 2014
Background It is common for palliative care patients to have reduced oral intake during their illness. Management of this condition includes discussion with the patient, family and staff involved, and may include giving nutrition with medical assistance. This can be done either via a plastic tube inserted directly into a vein or into the stomach or other parts of the gastrointestinal tract. It is unknown whether this treatment helps people to feel better or live longer. Study characteristics We searched the international literature for randomised controlled trials looking at the effects of medically assisted nutrition in adults receiving palliative care. Randomised controlled trials allocate patients to one of two or more treatment groups in a random manner and provide the most accurate information on the best treatment. The search was conducted in April 2013 and March 2014. Key results We found no randomised controlled trials. As a result, it is not possible to define the be
Background Many palliative care patients have a reduced oral intake during their illness. The management of this can include the provision of medically assisted nutrition with the aim of prolonging the length of life of a patient, improving their quality of life, or both. This is an updated version of the original Cochrane review published in Issue 4, 2008. Objectives To determine the effect of medically assisted nutrition on the quality and length of life of palliative care patients. Search methods We identified studies from searching Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE, CINAHL, CANCERLIT, Caresearch, Dissertation abstracts, SCIENCE CITATION INDEX and the reference lists of all eligible trials, key textbooks and previous systematic reviews. The date of the latest search was 26 March 2014. Selection criteria All relevant randomised controlled trials (RCTs) or prospective controlled trials (if no RCTs were found). Data collection an
Academic
Cochrane Pain, Palliative and Supportive Care Group
OX3 7LJ
51,750
-1,215
Dr Phillip Good
Not Provided
Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
40
RP-DG-1212-10013
Community-based Volunteer-led Support for Family Caregivers Caring for a Relative or Friend with Palliative and/or End-of-Life Care Needs at Home (Co-Care).
NIHR (non-ODA)
Research
Complete
Programme Grants for Applied Research
Researcher Led
Programme Development Grants
£90 691
7 novembre 2014
7 mai 2016
The aim of the Co-Care project is to develop and implement a system of community-based volunteer-led support for family caregivers caring for a relative or friend with palliative and/or end-of-life care needs at home. We know that providing effective palliative and end-of-life care for people at home with long term and life-limiting illness in the UK depends on the work of unpaid family caregivers, and that the economic value of this is huge. So supporting family caregivers is both important and cost-effective. However, family caregiving can be difficult and challenging, as well as deeply rewarding, and may affect the health and well-being of the carers themselves, leading for example to increased levels of distress and social isolation. This makes the work of caregiving harder, and caregiver illness or distress is a often contributory factor in health service use, including hospital admissions, unplanned admissions and delayed discharge, referrals to a day hospital or care of
Development Grant work plan The proposed programme development work plan consists of four interconnected research projects, spread over 18 months, some of which will be conducted in parallel. The main aim of the development phase of the programme is to work with and learn from the experiences and expertise of key stakeholders to establish a critical mass of evidence to underpin decisions about the proposed model of support, its evaluation, and implementation. We will use this phase to extend channels of communication and dialogue with research partners, including clinical trials specialists, implementation scientists and participants. Project 1 Aim: To complete a review of a critical mass of existing empirical evidence on the effectiveness of strategies to support family caregivers providing palliative and/or end-of-life care for a relative or friend in the community. Method: Relatively little empirical evidence on the potential role of volunteers in supporting family caregiv
Government/NHS
University Hospital Southampton NHS Foundation Trust
SO16 6YD
50,933
-1,435
Professor Jessica Corner
Not Provided
Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Social Care
Award does not have an ODA Downstream Partner
41
NIHR135361
Palliative Partners in Head and Neck Cancer (PP-HANC) - a network approach to addressing the needs of patients and their families
NIHR (non-ODA)
Research
Complete
Health Technology Assessment
Commissioned
HTA Commissioned
£102 652
1 avril 2022
31 juillet 2023
Background People with incurable head and neck cancer have very complex needs. The cancer and treatment cause severe difficulties in eating, speaking and breathing as well as pain, tiredness, isolation and low mood. Because of this, people with head and neck cancer may need to use hospital or emergency care services more often. For some people, whose cancer is incurable, this can occur even towards the end of their lives. Where individuals live, and how rich or poor the area is, affects whether or not those with head and neck cancer die at home or in hospital. The North of England has a high number of people who die from head and neck cancer. To learn more about the issues, help reduce variations in care, and improve experiences, we want to bring together a new team. The proposed research The new team, based in the North of England, will consist of people from universities (researchers, data specialists), people with experience of head and neck cancer, and people from the NH
Research question: This proposal will establish a palliative head and neck cancer (HNC) partnership and address whether high-quality routine data sources can be accessed, linked and extracted to investigate key research questions and priorities relating to healthcare utilisation and inequalities. Background: Those with incurable head and neck cancer (IHNC) have considerable unmet needs and complex symptom burden, with evidence of substantial geographical and/or socio-economic inequalities. Accurate baseline information on healthcare needs, resource utilisation and service provision in the last year of life is lacking. This places limits on service delivery planning and the development and testing of interventions to address inequalities. Our proposed partnership spans three regions, which nationally have some of the highest rates of IHNC. These regions have a strong history of delivering policy and practice relevant HNC research, but this has yet to include palliative and e
Academic
University of Liverpool
L69 7ZX
53,406
-2,967
Professor Joanne Patterson/Dr Catriona Mayland
0000-0002-4990-302X/0000-0002-1440-9953
Chief Investigator/Joint Lead Applicant
Cancer and neoplasms
None/None/8. Health and Social Care Services Research/7. Management of Diseases and Conditions
6.9 Resources and infrastructure (treatment evaluation)/5.9 Resources and infrastructure (treatment development)/8.5 Resources and infrastructure (health services)/7.4 Resources and infrastructure (disease management)
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
42
PB-PG-0214-33068
Palliative long-term abdominal drains versus repeated drainage in individuals with untreatable ascites due to advanced cirrhosis : a feasibility randomised controlled trial
NIHR (non-ODA)
Research
Complete
Research for Patient Benefit
Researcher Led
Research for Patient Benefit
£244 963
1 septembre 2015
31 août 2018
In cirrhosis the liver becomes damaged and scarred. Patients state that one of the worst aspects is their abdomen swelling with fluid (ascites) causing pain and breathlessness. Once the liver is so badly damaged these patients are unlikely to survive longer than six months. The patients come to hospital every one-two weeks and the doctors put a drain into their abdomen to remove about two gallons of fluid. This fluid immediately starts to build up again: we have no means of stopping that. Draining fluid in this way can cause pain, infection, and is expensive to the NHS. Our discussions with cirrhosis patients and carers suggest that most dislike frequent hospitalisation in their last few months of life. In some cancers this fluid is managed by putting a more permanent drain into the abdomen so that smaller amounts of fluid can be removed at home 2-3 times a week. This alternative way of draining fluid improves comfort and allows people to remain out of hospital. However before we st
Background Without liver transplantation, median survival in refractory ascites is < 6 months and management is frequent hospitalisation for palliative large volume paracentesis (LVP). LVP results in a poor quality of life (QoL) and can be expensive. Insertion of a long-term abdominal drain (LTAD) is an accepted palliative strategy in ascites due to terminal malignancy though has not been specifically researched in cirrhosis because of: - Complexity of moving care to the community including acceptability and tolerability of LTAD - Research design uncertainties Aims and objectives Our ultimate aim is to improve end of life care of individuals with a
Government/NHS
University Hospitals Sussex NHS Foundation Trust
BN11 2DH
50,817
-0,363
Professor Sumita Verma
0000-0001-7021-8409
Chief Investigator
Oral and Gastrointestinal
6. Evaluation of Treatments and Therapeutic Interventions/7. Management of Diseases and Conditions
6.4 Surgery/7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
43
14/197/44
Optimum ‘Hospice at Home’ Services for End of Life Care
NIHR (non-ODA)
Research
Complete
Health and Social Care Delivery Research
Researcher Led
HSDR Researcher Led
£789 565
1 février 2017
31 janvier 2021
Background to the study Offering people a choice about where they receive their care at the end of life is central to UK policy and the number of people wishing to die at home is increasing. We also know from work undertaken with the general public that care at home is an important concern for many people. Much effort has been invested in health services to support care at home, including services called “Hospice at Home” (HAH) which aim to offer hospice care in the individual’s home. The aim of hospice care is to improve the quality of life of people who have an incurable illness up to the point of death. This includes medical, emotional, social, practical, psychological, and spiritual care, as well as addressing the needs of the person’s family and carers. Currently a range of different HAH services exist in the UK and it is unclear which features of these services enable better care and outcomes at the end of life for patients and families. Therefore the research question we w
Evidence has shown that the number of patients wishing to die at home is increasing [1,2,3]. Providing patients with choice about where they receive their care at the end of life is central to UK policy [4]. Much effort has been invested in health services to support care in this setting, including services called Hospice at Home (HAH) which aim to offer the quality and ethos of hospice care at home. There is minimal consensus regarding what constitutes or defines a HAH service and a lack of evidence on what HAH features promote better care and outcomes at the end of life. The James Lind Alliance has identified this topic as a priority in its work: Palliative and end of life care Priority Setting Partnership: Putting patients, carers and clinicians at the heart of palliative and end of life care research [5]. Our aim is to investigate the impact of the organisation and delivery of different models of HAH services on patient and carer outcomes and experiences of end of life care.
Academic
University of Kent
CT2 7NZ
51,299
1,071
Professor Claire Butler
0000-0001-9501-2861
Chief Investigator
Generic Health Relevance
8. Health and Social Care Services Research/7. Management of Diseases and Conditions
8.1 Organisation and delivery of services/7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
44
13/20/01
The Prognosis in Palliative care Study II (PiPS2)
NIHR (non-ODA)
Research
Complete
Health Technology Assessment
Commissioned
HTA Commissioned
£821 485
1 mai 2016
30 avril 2019
Background: The term “prognosis” usually relates to the ability of clinicians to predict how long patients will survive. Doctors’ estimates are not very accurate. We developed the Prognosis in Palliative care Scales (PiPS) in order to predict survival in patients with advanced cancer no longer undergoing treatment. In our original study the PiPS was significantly more accurate than either a doctor's or a nurse's best guess about length of survival. Two different PiPS scores can be calculated (PIPS-A and PiPS-B), using routine clinical information (e.g. symptom scores and an assessment of overall health) with or without a blood test (depending upon whether the patient is competent to agree to providing one). Before we can recommend PiPS for routine use it is important to check that the scores remain as accurate and reliable as our original study suggested. PiPS is not the only way to predict survival. Four other scores may also be useful and need to be tested: the Palliative Prognostic
Background: PiPS-A [1], Palliative Prognostic Index (PPI) [2] and Palliative Performance Scale (PPS) [3] predict survival in patients with advanced cancer and can be calculated without a blood test. PiPS-B [1], Palliative Prognostic (PaP) score [4, 5] and Feliu Prognostic Nomogram (FPN) [6] require a blood test. The relative accuracy of the models, their acceptability to patients, carers and clinicians, and barriers to implementation are unknown. Primary aim: To validate PiPS-A&B and to compare PIPS-B against clinician predictions of survival (CPS). Secondary aims: (1) To validate PaP, FPN, PPI and PPS (2) To determine the acceptability of all prognostic models to patients, carers and clinicians and to identify potential barriers to use. Design: A mixed method approach including a prospective observational validation study and a qualitative interview study. Patients in the validation study will have prognostic scores and CPS recorded. Blood samples will only be collected from p
Academic
University College London
WC1E 6BT
51,524
-0,132
Professor Patrick Stone
0000-0002-5765-9047
Chief Investigator
Cancer and neoplasms
7. Management of Diseases and Conditions/4. Detection, Screening and Diagnosis
7.2 End of life care/4.2 Evaluation of markers and technologies
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
45
PB-PG-0706-10369
Optimisation of services for the care of people with Motor Neurone Disease (MND), based on an understanding of personal experience of MND in Lancashire and South Cumbria.
NIHR (non-ODA)
Research
Complete
Research for Patient Benefit
Researcher Led
Research for Patient Benefit
£144 949
9 janvier 2008
8 juillet 2010
MND results in profound limb weakness, speech, swallowing and breathing difficulties and has an average time from diagnosis to death of 14 months. As a result, people with MND have varied and complex needs, requiring input from a wide range of health, social and palliative care services. People with MND face many of the same problems as those affected by more frequently occurring illnesses, but in a much shorter timeframe. Health, social and palliative care service provision for MND can therefore legitimately be viewed as a model for other conditions. Government policy has stressed that services should be focussed on the needs of patients. This study will assess the extent to which the changing needs of people with MND are being met by health services during the course of their illness. The aims of the study are: Produce an accurate description of the MND population of Lancashire and South Cumbria regarding the level of disability, dependency, need for and availability of equipment
BackgroundMotor Neurone Disease results in weakness and wasting of the muscles, loss of mobility and difficulty with speech, swallowing and breathing, often compounded by psychological effects. People with MND, therefore, have varied and complex needs, requiring input from a wide range of health, social and palliative care services as their condition progresses. Research has shown that these needs are not always met. Service provision for MND can be viewed as an exemplar for other conditions as people with MND face many of the same problems experienced in more common conditions, but within a relatively short timeframe due to the rapidly progressive nature of the illness. Few studies have attempted to really explore the lived experiences of those affected by MND using in-depth qualitative methods.AimsThe study aims to use qualitative research methods e.g. in-depth tape recorded interviews and diaries to generate illness narratives to explore the personal experiences and perceptions of t
Government/NHS
Lancashire Teaching Hospitals NHS Foundation Trust
PR2 9HT
53,792
-2,707
Professor John Douglas Mitchell
Not Provided
Chief Investigator
Neurological
8. Health and Social Care Services Research/7. Management of Diseases and Conditions
8.1 Organisation and delivery of services/7.1 Individual care needs
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
46
NIHR135381
KEech End of life research Partnership NETwork (KEEPNET): A partnership network to enhance research capacity and capability to improve access of palliative and end-of-life care among the ethnic minority population across Hertfordshire, Bedfordshire, and Milton Keynes
NIHR (non-ODA)
Research
Complete
Health and Social Care Delivery Research
Commissioned
HSDR Commissioned
£107 462
1 janvier 2022
31 décembre 2022
Whilst patients who receive care from specialist palliative care teams tend to have a better death evidence suggests that minority ethnic groups are less likely than their white British counterparts to use these services. Barriers, which include lack of information about services available, religious, and family issues, communication, and structural barriers have all been shown to contribute to the limited uptake of end-of-life care services among the UK’s ethnic minority population. To effectively care plan for patients, we need to improve access to services for ethnically diverse patients by understanding the barriers to their uptake of services and developing suitable training for professionals to overcome these issues. Bedfordshire, Hertfordshire, and Milton Keynes all of which host significant ethnically diverse communities with pockets of high deprivation when compared to the UK average. Keech Hospice Care, located on the Bedfordshire/Luton border which provides hospice care
RESEARCH QUESTION How can we improve access and uptake to palliative and end-of-life (EoL) care services to reduce inequalities among ethnic minority populations who reside in Bedfordshire, Hertfordshire, and Milton Keynes? BACKGROUND The Better Endings report ‘Right care, Right place, Right Time’, states that patients who receive care from specialist palliative care teams tend to have a better death than those without access to this care. Despite this, evidence continues to suggest that ethnic minority groups are less likely than their white British counterparts to access and use end-of-life care services, and when they do, there is evidence of unmet needs. Barriers, which include lack of information about services, religious and family issues, communication and structural barriers have all been shown to contribute to the limited uptake of EoL care services among the UK’s ethnic minority population. AIMS AND OBJECTIVES This project is Phase 1 of a research partnership pro
Academic
University of Bedfordshire
LU1 3JU
51,878
-0,412
Professor Gurch Randhawa/Dr Erica Cook
0000-0002-2289-5859/0000-0003-4369-8202
Chief Investigator/Joint Lead Applicant
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
47
NIHR302193
Development of a core outcome set and associated measurement tools for neonatal palliative and end-of-life care
Non-NIHR funding
Training
Active
HEE/NIHR Integrated Clinical and Practitioner Academic Programme
Trainee Development
HEE/NIHR ICA Programme Clinical Lectureship
£661 480
1 juillet 2022
31 mars 2026
Background Death in the first 28 days of life, or 'neonatal death', represents the highest number of deaths in children under 5 in the UK. Each year 1,200 babies die during this period, with most neonatal deaths happening on neonatal units where babies receive treatment from specialist doctors and nurses. For many families, conversations will have occurred with professionals around whether or not to continue with lifesaving treatment for their babies. If it is agreed continuing treatment is not in babies' best interests, palliative, or 'end-of-life care', will be provided to babies and families. What constitutes end-of-life care, however, is unclear and professionals often provide different treatment to different families, reporting different outcomes in their research. This means we cannot compare whether one approach to neonatal end-of-life care is better than another. Creating a common, or 'core' set of outcomes from which to measure neonatal end-of-life care would allow us to de
Background Neonatal death is the leading cause of death in children under 5yrs in the UK; annually 1200 babies die in the first 28 days after birth. Many deaths occur following a decision between parents and clinicians to redirect treatment from active to palliative, however the evidence base supporting neonatal palliative and end-of-life care is sparse. Study comparison is difficult as researchers report different approaches towards, and outcomes of, palliative care in their work. Evidence synthesis is required to develop standardised outcomes and measurements which define safe and effective approaches to practice, taking into account the needs of families involved. This is particularly relevant for families from Black, Asian and Ethnic Minority populations where the risk of neonatal death is 73% higher compared to white babies. Aims & Objectives The aim of this research is to develop a core outcome set and associated measurement tools for a neonatal palliative and end-of-life care,
Academic
University College London
WC1E 6BT
51,524
-0,132
Dr Katie Gallagher
0000-0002-6847-9594
Award Holder
Reproductive Health and Childbirth
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
48
13/180/11
A Library of Published Palliative Care and end of life research as an annotated bibliography
NIHR (non-ODA)
Research
Complete
Health Technology Assessment
Commissioned
HTA Incentive Scheme (Cochrane)
£29 000
1 mai 2014
31 janvier 2015
n/a
Background In the review of End of Life Care in the UK1, serious concerns were expressed nationally about 1) a perceived lack of published research in the field of palliative and end of life care, 2) a lack of awareness of existing evidence, and 3) a lack of accessibility and utility of existing evidence. A body of evidence does exist, much of it within Cochrane reviews, although often deeper than the top line evidence, but this has not been systematically assembled into one accessible and navigable resource. We proposed to undertake systematic searching of international biomedical databases to identify research about the topic area of palliative and end of life care by searching the Cochrane Register of Studies as well as Medline and Embase. Search results were downloaded into an EndNote X7 database for de-duplicating and assessment. These records were then annotated as described below. Finally we planned to make the database available via an online searchable file. Annotati
Academic
Cochrane Pain, Palliative and Supportive Care Group
OX3 7LJ
51,750
-1,215
Professor Christopher Eccleston
0000-0003-0698-1543
Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
49
ICA-SCL-2015-01-001
Managing clinical uncertainty for older people in community hospitals to improve communication and palliative care; development, implementation and evaluation of the SPACEtoolkit – Symptom and Psychosocial Assessment and Communication Evaluation
Non-NIHR funding
Training
Complete
HEE/NIHR Integrated Clinical and Practitioner Academic Programme
Trainee Development
HEE/NIHR ICA Programme Senior Clinical Lectureship
£318 486
1 juin 2016
30 septembre 2021
Background to the research and aim Older people who are frail and experience multiple-illnesses are vulnerable to decline in wellbeing and slow recovery from seemingly minor health problem, like a chest infection. These episodes of decline are often accompanied by clinical uncertainty as to recovery or continued deterioration potentially leading to end-of-life. Community hospitals are important resources to manage episodes of decline both in supporting rehabilitation and recovery and providing end-of-life care. There are over 320 community hospitals in England.7 Older people and families often prefer these settings to acute hospital because they provide inpatient care nearer to home. The main reason for admission is because of a combination of an acute event such as a fall with more diffuse symptoms and concerns.8 During clinical uncertainty communication and support for patients and families is crucial to facilitate decision-making and understanding on expected outcomes of care.9,10
Background and aim Older people that live with frailty and multi-morbidities can experience marked physical decline and poor health outcomes from a seemingly minor health problem16. These episodes of decline are often characterized by uncertainty as to recover or continued deterioration leading to end-of-life. The use of tools (e.g. outcome measures) in clinical practice can support assessment and communication at times of uncertainty and improve patient outcomes.17,18 However, relatively little is known about their usefulness in non-acute settings to support interventions that either promote recovery or palliate the signs and symptoms of deterioration (sometimes referred to as progressive dwindling)19. There is a need for development work grounded in the experiences of frail older people to ensure that the tools are context specific and designed to support assessment of symptoms, address concerns and involve patients and families in decision-making.20 This study aims to improve comm
Academic
King's College London
SE1 8WA
51,505
-0,113
Professor Catherine Evans
0000-0003-0034-7402
Award Holder
Generic Health Relevance
6. Evaluation of Treatments and Therapeutic Interventions/7. Management of Diseases and Conditions
6.6 Psychological and behavioural/7.2 End of life care
MLTC/Social Care
Award does not have an ODA Downstream Partner
50
NIHR133518
ThOracic Umbrella RadIotherapy STudy in stage IV NSCLC - TOURIST
NIHR (non-ODA)
Research
Active
Health Technology Assessment
Researcher Led
HTA Clinical Trials & Evaluation
£3 431 334
1 avril 2023
30 septembre 2028
Non-small cell lung cancer (NSCLC) is the biggest cancer killer in the UK and worldwide. Over half of patients present with advanced disease which means treatment focuses on controlling symptoms and extending life rather than cure. The range of systemic treatment options (drugs) have improved significantly over the last decade with chemotherapy, immunotherapy and oral tablet targeted therapies now in routine use. Radiotherapy has a strong track record in controlling symptoms and is cost effective and well tolerated. However, the evidence for radiotherapy was gathered before modern drugs were routinely used and our knowledge of how to combine them with radiotherapy is limited. We have been working with a number of lung cancer patient groups who have highlighted their experiences of radiotherapy and support investigation into the role of radiotherapy in today’s treatment regimens. With their active involvement we aim to study the use of palliative radiotherapy across the spectrum of adv
Background Non-Small Cell Lung Cancer (NSCLC) is the leading global cause of cancer death with an incidence of >1.2 million; 70% of patients present with incurable disease with treatment aimed at alleviating symptoms, maintaining / improving quality of life (QoL) as well as prolonging survival. Radiotherapy is widely used in stage IV NSCLC and has proven to be effective in reducing patients’ symptom burden. Current radiotherapy practice is based on data originating from a series of dose-fractionation trials in the 1990s (Stevens R; 2015), when systemic therapy options were limited. Trials tended to focus on patients with locally advanced disease with a predominance of patients with good performance status (PS 0-1). The last decade has seen major improvements in systemic therapy (chemotherapy, immunotherapy and mutation-targeted tyrosine kinase inhibitors (TKIs)). These improvements mean that systemic therapy is now standard of care for PS 0–2 patients (NICE; 2019) and radiotherapy a
Government/NHS
The Christie NHS Foundation Trust
M20 4BX
53,430
-2,230
Professor Matthew Hatton/Dr David Woolf
0000-0003-2778-7926/Not Provided
Joint Lead Applicant/Chief Investigator
Cancer and neoplasms
None
6.5 Radiotherapy and other non-invasive therapies
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
51
NIHR302539
Mobilising knowledge of Death Literacy across non-clinical community networks [DAHLIA]
NIHR (non-ODA)
Training
Active
NIHR Fellowships
Trainee Development
Advanced Fellowship
£276 972
1 janvier 2023
31 décembre 2026
Background We have a range of options to help people plan for a birth of a child. There are also options to personalise the experience of dying according to a person's preferences, values, and beliefs. However, we need to advertise this more and help people prepare. A stressful end-of-life experience can be traumatic for the people that witness the death. Trauma can be prevented, or reduced, if we invest more in death education and specific community development strategies. Why is the research needed now? End-of-life care is a public health concern. More people are expected to die each year for the next 15years. It will put more strain on services following the pandemic. If we do not share the responsibility of helping with end-of-life care we'll see more, and potentially unwanted, deaths in hospital, more cases of carer exhaustion, and higher rates of disabling bereavement. Aims of the research This research aims to spread Death Literacy. This is practical know-how about what to d
Palliative and end-of-life care are widely recognised as public health concerns. The way we die has changed significantly over recent decades. More people live with high support needs for longer towards the end-of-life. This is a concern for community care systems because more people are projected to die in the UK annually for the next 15years. This increase in demand for palliative and end-of-life care is likely to place further stress on statutory care services. An important point to note: most care towards the end-of-life in community settings is delivered by informal sources, usually family and friends. For a dying person and their caregivers there are known comorbidities that can occur (e.g. social isolation, anxiety, depression). These experiences are amenable to prevention or harm reduction through early intervention and other public health strategies involving death education and community development. The aims of the fellowship are twofold: to mobilise Death Literacy knowl
Academic
University of East Anglia
NR4 7TJ
52,622
1,241
Dr Guy Peryer
0000-0003-0425-6911
Award Holder
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
52
CAT CL09-06
The experiences of community health professionals following their involvement in providing palliative care to a child with cancer within the family home.
Non-NIHR funding
Training
Complete
HEE/NIHR Integrated Clinical and Practitioner Academic Programme
Trainee Development
NIHR/HEE CAT Clinical Lectureship
£111 062
1 mars 2010
28 février 2014
Training Award
The proposed study aims to compare the perceived role of the GP in providing palliative care for the child with cancer with the perceptions of bereaved families.The key aims are to identify; discrepancies between family and GP perceptions, areas where the GP role could be enhanced through education and training, findings that could be transferable to palliative care generally and ways of enhancing the role of the Macmillan team in supporting GPs in this arena. Data collection methods include semi-structured interviews and Q-methodology.The findings will have a direct impact on my role as a paediatric Macmillan nurse, informing practice through an increased awareness of the family’s experience and identifying, and addressing, areas where practice could be enhanced.In addition the lectureship will provide me with an opportunity to build on my research knowledge and experience and further develop my clinical skills.
Government/NHS
Birmingham Women's and Children's NHS Foundation Trust
B15 2TG
52,453
-1,943
Dr Susan Neilson
0000-0003-4275-9341
Award Holder
Cancer and neoplasms
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
53
15/46/02
Methylphenidate versus placebo for fatigue in advanced cancer (MePFAC)
NIHR (non-ODA)
Research
Complete
Health Technology Assessment
Commissioned
HTA Commissioned
£1 943 962
1 mai 2017
31 octobre 2023
Patients with cancer often experience severe fatigue which can cause problems with their ability to look after themselves and which can result in a decreased quality of life. Previous studies have suggested that the drug methylphenidate [MPH] (also known as Ritalin®) may have some benefits, but the evidence is not clear. MPH is a controlled drug (like morphine). It is most commonly used to treat Attention Deficit Hyperactivity Disorder (ADHD) in children. MPH can cause side-effects such as agitation, anxiety, difficulty sleeping & high blood pressure (BP). At the moment it is unclear whether or not MPH would be helpful in patients with cancer. Some studies have shown that MPH is effective for treating cancer-related fatigue and others have shown no benefit. To answer this question we will undertake a clinical trial. Patients with secondary cancer & fatigue will be invited to take part. If they agree they will receive nine weeks’ treatment with either MPH or a placebo tablet (an ina
Design: Prospective randomised double-blind placebo-controlled trial with internal pilot Aim: Estimate clinical effectiveness of methylphenidate (MPH) vs placebo for cancer-related fatigue (CRF) in patients receiving specialist palliative care (SPC) Setting: Multi-centre study with community, day-care & outpatients Population: Patients with advanced cancer with CRF & receiving SPC Inclusions: 18+ years; advanced cancer; moderate to severe fatigue; informed consent; prognosis 2-12 months; under care of SPC Exclusions: Known contraindication to MPH; anaemia; liver failure; concomitant psycho-stimulant use Health technologies being assessed: MPH tablets 5mgs/day increasing up to maximum 60mgs/day in divided doses Outcomes: Primary outcome is fatigue at 6 weeks measured by Functional Assessment of Chronic Illness Therapy (FACIT-F). Secondary outcomes (measured at 3 & 9 weeks) are other measures of quality of life (using European Organisation for Research & Treatment o
Academic
University College London
WC1E 6BT
51,524
-0,132
Professor Patrick Stone
0000-0002-5765-9047
Chief Investigator
Cancer and neoplasms
6. Evaluation of Treatments and Therapeutic Interventions
6.1 Pharmaceuticals
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
54
RP-PG-0610-10114
Improving the Management of Pain from Advanced Cancer in the Community (IMPACCT)
NIHR (non-ODA)
Research
Complete
Programme Grants for Applied Research
Researcher Led
Programme Grants for Applied Research
£2 146 145
1 juin 2012
31 octobre 2018
Each year in England and Wales, 140,000 people die from cancer and 105,000 will suffer cancer pain. Patients spend 65-80% of their last 6 months of life at home and research shows that for these patients, pain remains common, severe and under-treated, sometimes leading to hospital admission. Significant barriers to good pain control include inadequate support and advice to patients, poor assessment and communication, and lack of access to an adequate prescription and timely analgesia.We aim to improve the management of pain from advanced cancer for palliative care patients and their carers who are living at home, leading to reductions in pain related distress and reduce the impact on the NHS of avoidable admissions. Our principal objectives are to enable patients and their carers to more easily access support and advice, communicate their pain, and receive timely and effective painkillers. We will evaluate the impact of our interventions in routine care and begin to implement them. We
AIMS AND OBJECTIVESOur overall aim is to improve the management of cancer pain for palliative care patients and their carers who are living at home. Our principal objectives are to enable patients and their carers to more easily access support and advice, communicate their pain, obtain timely and effective medication; and to evaluate the impact of our interventions in routine care. BACKGROUNDEach year in England and Wales, 140,000 people die from cancer and 105,000 will suffer cancer pain. Patients spend 65-80% of their last 6 months of life at home though many are admitted as inpatients nearer to death. For community based cancer patients, research shows that pain remains common, severe and under-treated. Barriers to good pain control include inadequate support and patient education, poor assessment and communication, and lack of access to an adequate prescription and timely analgesia. Effective interventions to address these have been described but are poorly implemented in routine p
Government/NHS
Leeds Teaching Hospitals NHS Trust
LS9 7TF
53,807
-1,520
Professor Michael Bennett
0000-0002-8369-8349
Chief Investigator
Cancer and neoplasms
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
55
KMRF-2015-04-003
Towards better quality end of life care for patients and families: using ‘circles of learning’ within NHS acute hospitals and voluntary-sector hospices to mobilise knowledge about patient-level outcome measures in palliative and end of life care.
NIHR (non-ODA)
Training
Complete
NIHR Fellowships
Trainee Development
Knowledge Mobilisation Research Fellowships
£175 795
1 juin 2016
31 mai 2018
What is the problem we want to address? Over half a million people die each year in England and Wales. This number is set to steadily increase with an ageing population. But the care of people towards the end of their life is not always good. Findings from national surveys show that - for some people - care is poor, especially in hospitals. One of the main reasons for poor end-of-life care is that it has been difficult to measure the quality of care which health services provide at the end-of-life (not just the experience of care, but whether care is improving symptoms and addressing people's needs as it should). For any one organisation, a few people and their families may report poor care - but the hospital or service needs to know about care for everyone they look after, and which areas of care are poor, so as to address the deficiencies. What is our proposed solution? We have developed a set of measures which reflect what matters most to patients who are seriously ill and their f
Background: End-of-life care is reported as 'poor' for 10% of deaths across England, with poor symptom management, communication and recognition of dying in NHS hospitals. One main reason that poor end-of-life care persists has been the difficulty demonstrating systematically the quality of end-of-life care. Until recently, valid, reliable and responsive outcomes measures for this population have not been available, have not been implemented into practice, and have not been utilised to assess whether care is (or is not) meeting the needs of patients and families. Now however, there is robust evidence to change this. Valid and reliable measures - which capture what matters most to patients and families - are available. Clinicians are using these, but find it difficult to act on this information in a systematic way to improve care. Managers have service-level outcomes data, but do not know how to use this to demonstrate effective service delivery, inform quality improvement or shape ser
Academic
King's College London
SE1 8WA
51,505
-0,113
Ms Marsha Dawkins
0000-0002-0284-7251
Award Holder
Generic Health Relevance
8. Health and Social Care Services Research/7. Management of Diseases and Conditions
8.4 Research design and methodologies/7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
56
ICA-CL-2015-01-018
Understanding factors that affect decision making and variation in the quality of end of life care for patients with stage 5 chronic kidney disease (CKD) on dialysis: the QUALYCARE Renal study
Non-NIHR funding
Training
Complete
HEE/NIHR Integrated Clinical and Practitioner Academic Programme
Trainee Development
HEE/NIHR ICA Programme Clinical Lectureship
£187 249
1 avril 2016
30 septembre 2019
Around 50,000 people in the UK have stage 5 Chronic Kidney Disease, meaning they have lost most of their kidney function. The majority are elderly. Dialysis is an effective but invasive treatment. Dialysis can be performed at home but most patients in the UK have their dialysis treatment in a dialysis unit in hospital, usually three times a week. During dialysis treatment blood is taken from the body, pumped through an artificial kidney and then back to the body. The time spent on the machine for each patient is usually four hours per session. For patients that are not medically fit to have a kidney transplant, their dialysis treatment is life-long. Despite dialysis treatment, some patients experience symptoms such as pain, breathlessness, itching, lethargy and weakness. In addition, patients are required to adhere to strict dietary and fluid restrictions, and manage multiple medicines. Life depends on continual reconnection to the dialysis machine; complex self-monitoring and treatmen
Background Dialysis withdrawal is common practice and reported as the second leading cause of death in patients with end stage renal disease. Nevertheless, we know little about this complex phenomenon and there is only one UK dialysis withdrawal study available to inform practice in this area. The literature to date has focused on dialysis withdrawal practice; the incidence of dialysis withdrawal and medical factors predictive of dialysis withdrawal prior to death. There is a paucity of evidence about patient and carer experiences and the quality of care as the end of life approaches and few studies have adopted a patient centred approach. This has implications for studying and improving care at the end of life for patients with stage 5 chronic kidney disease (CKD) following dialysis withdrawal. The aims of this study are therefore to understand factors that influence decision making and variation in the quality of end of life care for patients with stage 5 chronic kidney disease (CKD)
Academic
University of Southampton
SO17 1BJ
50,934
-1,396
Dr Emma Murphy
Not Provided
Award Holder
Renal and Urogenital
7. Management of Diseases and Conditions/7. Management of Diseases and Conditions
7.2 End of life care/7.3 Management and decision making
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
57
PB-PG-0906-11387
The experiences and expectations of older people resident in care homes, their carers and professionals of end of life care and symptom relief needs: a prospective study.
NIHR (non-ODA)
Research
Complete
Research for Patient Benefit
Researcher Led
Research for Patient Benefit
£237 627
1 janvier 2008
31 mai 2010
Most older people in care homes are over 80 years of age and have many personal and health care needs. For the majority their life expectancy is less than three years. This study considers the particular issues that arise for residents as they approach the end of their life. In particular it considers how different settings, services and approaches to end of life care may affect an older resident’s views, experience, health, need for care, and ultimately end of life care and place of death. So that we can understand in depth how peoples' health,views and needs for support change over time we will study over a year the health and function of older people resident in nine care homes. To establish how living in a care home affects peoples's decision making about end of life care a smaller group of older people will also be interviewed about their thoughts and wishes about dying . We will interview staff in these care homes and in NHS community services. Information will be collected
BackgroundMany older people aged over 85 live in a care home. Dying is part of care home life and an important aspect of the overall quality of care provided. Despite recent initiatives to improve access to palliative care services the experience of the older person is largely unknown. Studies often rely on proxy accounts and retrospective data that focuses on prognostication or the management of symptoms. How individuals engage with the anticipation of dying and if living in a care home affects their decisions and need for support is unknown. It is also only partially understood how the culture and organisation of a home affects end of life care or if different dying trajectories, high levels of cognitive impairment and co-morbidity affects the recognition of need and access to services.AimsTo understand how the care home environment influences the views, experiences and expectations of end of life care in care homes To listen to, to describe and analyse the characteristics, expectat
Government/NHS
East and North Hertfordshire NHS Trust
SG1 4AB
51,925
-0,213
Professor Claire Goodman
0000-0002-8938-4893
Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions
7.3 Management and decision making
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
58
053/0008
Defining the Palliative Care Needs of People with Severe Parkinsonian Disorders
NIHR (non-ODA)
Research
Complete
Policy Research Programme
Researcher Led
Policy Research Programme
£228 675
1 décembre 2006
31 mars 2011
Background1) To describe the physical, emotional, social, healthcare and information needs of people living with advanced Parkinson's disease (PD), and with multiple system atrophy (MSA) and progressive supranuclear palsy (PSP). 2) To identify the key factors associated with impaired quality of life (QL), unresolved symptons and psychological needs in people affected by theses disorders. 3) To identify key factors that influence health costs. 4) To provide evidence of palliative care needs and trigger points for referral to palliative care services for these groups.AimsHISTORIC PROJECT - Entire abstract transferred from the previous database into the [Scientific summary background] field of this database.Plan of InvestigationHISTORIC PROJECT - Entire abstract transferred from the previous database into the [Scientific summary background] field of this database.Potential ImpactHISTORIC PROJECT - Entire abstract transferred from the previous database into the [Scientific summary backg
Academic
King's College London
SE1 8WA
51,505
-0,113
Professor P.N. Leigh
Not Provided
Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions/7. Management of Diseases and Conditions
7.1 Individual care needs/7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
59
NIHR133889
Palliative Long-term Abdominal Drains Versus Repeated Drainage in Untreatable Ascites Due to Advanced Cirrhosis: A Randomised Controlled Trial (REDUCe 2 Study)
NIHR (non-ODA)
Research
Active
Health Technology Assessment
Researcher Led
HTA Clinical Trials & Evaluation
£1 936 183
1 mai 2022
31 janvier 2027
Our aim is to see if long-term abdominal drains (LTADs) result in better quality of life in patients with fluid in the belly (abdomen) due to liver scarring, compared with current standard of care. The liver can be damaged (scarred), by excessive alcohol and viral infections. If liver damage continues, this scarring leads to permanent damage (cirrhosis). As cirrhosis progresses, it causes a painful buildup of fluid (ascites) in the abdomen. Initially, drugs can treat ascites, but these may stop working, leading to untreatable ascites. A liver transplant is then the best option. Most people, however, do not receive a transplant due to concerns about their alcohol use or lack of donors. People with cirrhosis and untreatable ascites who do not receive a liver transplant live on average for about six months. Medical care then focuses on controlling symptoms and having the best possible quality of life. This is known as palliative care. Current standard palliative care for untreatabl
RESEARCH QUESTION: Do palliative long-term abdominal drains (LTADs) result in better health related quality of life (HRQoL) in patients with refractory ascites due to end-stage liver disease (ESLD) compared with standard of care (large volume paracentesis, LVP)? BACKGROUND: Refractory ascites confers a median transplant-free survival of six mths and needs repeated hospitalisation for drainage (LVP). LTADs allow home drainage but are not routinely used in ESLD. Our REDUCe study (LVP vs. LTADs in ESLD) demonstrated feasibility to proceed with a definitive trial. AIM: To assess whether LTADs result in better HRQoL vs. LVP in patients with refractory ascites due to ESLD.
Government/NHS
Brighton and Sussex University Hospitals NHS Trust
BN2 5BE
50,819
-0,118
Professor Sumita Verma
0000-0001-7021-8409
Chief Investigator
Oral and Gastrointestinal
6. Evaluation of Treatments and Therapeutic Interventions
6.3 Medical devices
Social Care
Award does not have an ODA Downstream Partner
60
PDF-2013-06-001
Children and Young People with Life-Limiting Conditions and Hospital Admissions to Paediatric Intensive Care Units in England; the Development of a Clinical Scoring System.
NIHR (non-ODA)
Training
Complete
NIHR Fellowships
Trainee Development
Post Doctoral Fellowship
£248 571
1 janvier 2014
31 août 2017
There are growing numbers of children in England with medical conditions that will shorten their lives (Life-Limiting Conditions (LLC)). Many of these children have repeated hospital admissions and some require intensive care. Many of the deaths in this group occur in intensive care. This study will use routinely collected data to describe what happens to children with LLC admitted to paediatric intensive care (PICU) and develop a scoring system which can help identify those children who would benefit from PICU and those for whom it would be futile and may receive more appropriate palliative care in a different healthcare setting.
Training Award
Academic
University of York
YO10 5DD
53,948
-1,054
Professor Lorna Fraser
0000-0002-1360-4191
Award Holder
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
61
NIHR300437
Functional and quality of life change for patients undergoing treatments for recurrent oropharyngeal cancer and the impact on treatment decision making.
Non-NIHR funding
Training
Complete
HEE/NIHR Integrated Clinical and Practitioner Academic Programme
Trainee Development
HEE/NIHR ICA Programme Clinical Doctoral Research Fellowship
£245 274
1 décembre 2020
30 septembre 2024
Approximately 9000 people diagnosed with head and neck cancer (HNC) are treated by the NHS every year. Oropharyngeal cancer (OPC), involving the tonsils and back of the tongue, is increasing. Treatments include radiotherapy, chemotherapy and surgery. OPC can have a devastating impact on communication and swallowing. Speech & Language Therapists (SLTs) assess, diagnose and treat communication and swallowing difficulties. The overall cure rate for OPC remains poor, with disease returning in approximately 20-30%. When the disease comes back, it is very difficult to treat. Usually, the only option which may offer cure is open surgery or a second course of radiotherapy. Open surgery involves cutting through the lip and jaw to remove the tumour. Complications such as poor healing, long hospital stays and chest infections due to unsafe swallowing (food or fluids entering the lungs on swallowing) are common. A second course of radiotherapy may be possible however as with surgery, this can caus
The incidence of oropharyngeal cancer (OPC) in the UK has increased by 50% in the last 15 years. Despite treatment advances, recurrence rates remain high at 20-30%. The UK standard of care is open surgery, an intervention associated with high morbidity. Transoral robotic surgery (TORS) is now being considered as a minimally invasive option with encouraging oncological control. There may be opportunities for re-irradiation however this has the potential for severe treatment toxicity. Non-curative options include palliative systemic treatments or best supportive care. National guidance recommends that patients should be counselled on survival and functional outcome. However, functional data has not been reported systematically to allow its use to prepare patients, personalise care and inform service planning. Research Question: What is the trajectory of swallowing and communication change for patients undergoing treatments for recurrent OPC and how does this influence treatment decision
Government/NHS
The Royal Marsden NHS Foundation Trust
SW3 6JJ
51,491
-0,173
Ms Grainne Brady
0000-0002-2622-1675
Award Holder
Cancer and neoplasms
7. Management of Diseases and Conditions/7. Management of Diseases and Conditions
7.3 Management and decision making/7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
62
RP-DG-0611-10006
Withdrawal of Life sustaining treatment in newborn babies - The WILST Study
NIHR (non-ODA)
Research
Complete
Programme Grants for Applied Research
Researcher Led
Programme Development Grants
£95 233
1 janvier 2013
31 décembre 2013
Due to advances in the treatment of sick newborn infants, parents may be asked to participate in difficult decisions regarding the continuation or discontinuation of life sustaining treatment from their infants. It is important to understand the experiences of parents facing these difficult decisions in order to enable health care professionals to meet their needs and provide support. Understanding how difficult decisions are made also provides important information for training and provision of palliative care in the neonatal unit. Whilst the concept of palliation (moving treatment from curing to comfort and family and patient support) is more familiar within adult services, it is currently unclear as to how this should be implemented within neonatal units. Through understanding how the process currently functions, an evidence base can be created upon which evidence based perinatal palliative care pathways can be recommended. This application assesses the size and extent of criti
This PDG will explore decision-making, parental perceptions of the process and outcomes of withholding or withdrawal of life sustaining treatment (WILST) and/or DNR orders for newborn babies; the objectives are: 1.To understand how the components of palliative care are delivered in perinatal care. 2. To evaluate outcomes for babies and their families for whom a difficult decision has been made in relation to their mortality and morbidity, including situations where disagreement between parents and carers occurs 3. To investigate how parents and health care professionals make difficult decisions about potentially withholding or withdrawing life sustaining treatment in their baby 4. To describe how information is shared between health care professionals and parents in these complex situations Methods: A mixed methods approach will be used, using both qualitative case studies and semi-structured questionnaires for quantitative analysis. Piloting prospective data collection for a Na
Government/NHS
University College London Hospitals NHS Foundation Trust
NW1 2PG
51,526
-0,137
Professor Neil Marlow
0000-0001-5890-2953
Chief Investigator
Reproductive Health and Childbirth
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
63
NIHR129171
Electronic Palliative Care Co-ordination Systems (EPaCCS) in end of life care: evaluating their implementation and optimising future service provision
NIHR (non-ODA)
Research
Complete
Health and Social Care Delivery Research
Commissioned
HSDR Commissioned
£659 116
1 septembre 2020
30 novembre 2023
PROJECT BACKGROUND A long-term disease or physical ailment which is worsening, growing or spreading is referred to as a ‘progressive chronic illness’. Patients with a progressive chronic illness should be able to discuss their care preferences with health professionals at any point in their illness. These preferences should then be documented so that they are taken into account in the care provided for people approaching the end-of-life. Care preferences might include: being able to receive care in a chosen place (e.g. at home), the type and level of medication prescribed to manage pain, the extent of any necessary visits to a hospital and a patient’s important contacts. Electronic Palliative Care Coordination Systems (EPaCCS) are electronic systems designed to hold this important information and be part of a patient’s electronic medical record. Any health professionals involved in a patient’s direct care will be able to view and update EPaCCS following discussion and agreemen
BACKGROUND Electronic Palliative Care Co-ordination Systems (EPaCCS) are central to end of life care Policy. However, there are critical gaps in the evidence base underpinning their use. It is not clear how EPaCCS are currently being implemented across England, and there has been a distinct lack of research on how they are being used in routine care. AIM: To understand how EPaCCS are currently being used in routine care, guide the development of interventions to support their optimal implementation, and maximise the benefit to patients. RESEARCH OBJECTIVES 1. To examine how EPaCCS are being implemented nationally, their intended impact, cost, and the existing processes for monitoring their uptake and use. 2. To examine the perceptions of healthcare professionals, both in the community and hospital-based, on the value and impact of EPaCCS in advance care planning (ACP) in the management of patients with progressive chronic illnesses. 3. To explore factors influencing
Academic
University of Leeds
LS2 9JT
53,808
-1,553
Professor Michael Bennett/Associate Professor Matthew Allsop
0000-0002-8369-8349/0000-0002-7399-0194
Joint Lead Applicant/Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
64
NIHR161150
Optimising delivery of integrated palliative care and heart failure services: A realist evaluation (PalliatHeartSynthesis II)
NIHR (non-ODA)
Research
Contracted
Health and Social Care Delivery Research
Researcher Led
HSDR Researcher Led
£847 040
1 janvier 2025
31 décembre 2027
Heart Failure (HF) is referred to as a modern-day epidemic across the world. HF mostly affects older people who are over 75 years old, who usually have a lot of healthcare problems. This makes it difficult for the health service to help all the people with HF as they have limited resources. Meeting the needs of people with HF also costs a lot of money as they often have to go into hospital. People with HF also have a lot of emotional and physical symptoms which makes their lives difficult. Evidence from recent research shows that people with HF can have a better quality of life (QoL), less symptoms, and don’t have to visit, or be admitted to hospital as much when HF and palliative care (PC) services work together. Policies for end-of-life care have been in place across all of the UK for over 10 years. These policies stress how important it is for everyone with a life-limiting illness to have access to palliative care if they need it, not just people with cancer. However, people with ad
Background Inequity of palliative care provision is an ongoing problem for underserved groups, such as those with heart failure (HF) who are mostly older age with multi-morbidities. This puts considerable burden on patients, their caregivers and health services with frequent avoidable hospitalisations. Recognising the importance of this topic, the NIHR HS&DR funded our research team to complete a realist synthesis of the integrated palliative care (PC) and HF literature (PalliatHeartSynthesis – under review). The aim was to understand what kind of integrated PC and HF services work, why, how and for whom. The synthesis found that integrated PC and HF services work when service providers are motivated to integrate services and have the right opportunities and capabilities to support behaviour change. However, our synthesis also identified significant knowledge gaps. Most documents were from America: few focused on the UK NHS setting. While acknowledging these limitations, we developed a
Academic
The Queen's University of Belfast
BT7 1NN
54,585
-5,934
Dr Tracey McConnell
0000-0003-1292-8597
Chief Investigator
Cardiovascular
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
65
DRF-2017-10-063
Developing a multi-component intervention for the prevention and management of delirium in hospice in-patient units: a targeted behaviour change approach.
NIHR (non-ODA)
Training
Complete
NIHR Fellowships
Trainee Development
Doctoral Research Fellowship
£297 090
1 janvier 2018
31 août 2023
Improving care of delirium in hospices What is the problem to be addressed? Delirium is a condition in which people become confused over a short time due to causes including infection, medication, dehydration and sleep problems. Several of these may occur at the same time. People with delirium may find it hard to think clearly, pay attention and remember things. They may become restless and agitated or withdrawn and sleepy. They may lose the ability to make decisions about their care and to have meaningful communication with family and friends. Delirium is distressing for patients, their families and people caring for them. People who have been admitted to a hospice are at particular risk of delirium because of the advanced nature of their illness, but little is known about how to prevent or manage this frightening condition in hospices. There is strong evidence that delirium can be prevented in hospitals using 'multi-component interventions' aimed at the potential causes of delirium.
Background Delirium is a distressing condition which is commonly experienced by patients in hospices. Prevalence in palliative care in-patient settings ranges from 13 to 42% on admission and 58 to 88% in the last weeks of life2. It is characterised by disturbances in attention, awareness and cognition which have a rapid onset and fluctuating course3. Delirium is associated with serious adverse outcomes and for hospice patients it can result in the loss of decision-making capacity and prevent meaningful communication at a critical time4, 5. Multiple risk factors have been identified for delirium in patients admitted to hospitals (as distinct from hospices) including sleep deprivation, dehydration and use of psychoactive drugs6, 7. There is strong evidence that the use of multi-component interventions (MCIs) which address modifiable risk factors in hospitalised patients can significantly reduce new onset delirium 8. Strategies to address risk factors are used both to prevent delirium a
Academic
University of York
YO10 5DD
53,948
-1,054
Ms Imogen Featherstone
0000-0002-9042-7600
Award Holder
Mental Health
3. Prevention of Disease and Conditions, and Promotion of Well-Being/7. Management of Diseases and Conditions/8. Health and Social Care Services Research
3.1 Primary prevention interventions to modify behaviours or promote well-being/7.2 End of life care/8.1 Organisation and delivery of services
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
66
11/108/06
Does early referral of patients with metastatic non-small cell lung cancer to UK specialist palliative care services make a difference in their quality of life or survival? Acronym: SPECIAL (Standard or PalliativE Care In Advanced Lung cancer)
NIHR (non-ODA)
Research
Complete
Health Technology Assessment
Commissioned
HTA Commissioned
£559 919
1 mars 2014
31 mai 2016
In the past 10 years the Department of Health, NICE and Cancer Action Team have issued documents and policies which are key drivers to ensuring minimal standards for equitable and sustainable high quality palliative and end of life care for cancer patients, aimed at optimising quality of life as well as prolonging survival. In the situation of metastatic non-small cell lung cancer (NSCLC), these policies are vital because as a group, from the time of diagnosis, patients have a poor prognosis and a very heavy burden of symptoms, psychological and social needs. Lung cancer and the NSCLC variety are the commonest cancers occurring in the UK and generally have a very poor outlook, in spite of the best of modern anti-cancer treatment. As NSCLC patients are usually older and often come from socio-economically deprived backgrounds, their cancer treatment plan needs to take into account many such factors as well as attending to appropriate anti-cancer treatments such as chemotherapy or radi
Consecutive newly diagnosed patients with stage 4 NSCLC will be identified at weekly Lung Cancer MDT meetings. Diagnosis of lung cancer will be made preferentially on histology or cytology, but in the interests of capturing patients with lower performance status (PS) or older age, in whom invasive investigations may be inappropriate, radiological evidence of advanced metastatic lung cancer will be accepted. Patients will be screened and approached at the first clinic visit after the MDT making the diagnosis. After being told of the diagnosis and treatment plan, if it is thought clinically appropriate by the clinician seeing the patient, information will be given about the feasibility study. Patients will be given 24 hours to consider taking part. A research nurse will contact the patient by phone and arrange to see the patient at the next clinic visit, or at a specially arranged visit within 2 weeks This is a two part study. The first stage is a feasibility study conducted in three si
Academic
The University of Sheffield
S10 2TN
53,381
-1,489
Emeritus Professor Sam Ahmedzai
0000-0002-2028-8510
Chief Investigator
Cancer and neoplasms
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
67
PB-PG-0613-31073
Use of Methylnaltrexone for the Treatment of Opioid Induced Constipation & Gastro-Intestinal Stasis in Intensive Care Patients (MOTION)
NIHR (non-ODA)
Research
Complete
Research for Patient Benefit
Researcher Led
Research for Patient Benefit
£335 904
1 mars 2015
31 décembre 2017
The drug methylnaltrexone is approved for use in the palliative/end of life care setting for the tratement of constipation caused by opioid drugs. We believe that the use of methylnaltrexone for patients taking opiods will be of even greater benefit in the critical care population. Opioid drugs form a fundamental part of the sedation and pain relief required for critically ill patients to tolerate mechanical breathing assistance to sustain life. Unfortunately, along with the desired effects of opioids come considerable side effects including pruritus (itching), suppression of the immune system and most clinically relevant gastrointestinal dysfunction. This leads to the upper gastrointestinal passage being unable to properly digest food, constipation leading to stomach bloating, large immobile stool volume in the bowel (faecal impaction) and infection. There have been several case reports supporting the use of methylnaltrexone in the intensive care setting, and we ourselves have used
Methylnaltrexone is already approved for opioid induced constipation in the palliative care setting following conclusive Phase III studies (8,9). We believe that its benefits will be even more impressive in the critical care population. Opioids form a fundamental part of the sedation and analgesia required for critically ill patients to tolerate mechanical positive pressure ventilation to sustain life. The opioids (morphine, fentanyl, alfentanyl or remifentanyl) are given as an intravenous infusion. The central nervous system mediated respiratory suppression and sedation are essential for ventilator synchrony. Unfortunately along with the desired central effects come considerable systemic side effects including pruritus, immunosuppression and most clinically relevant gastrointestinal dysfunction. This manifests as upper gastrointestinal intolerance of enteral feeding, constipation leading to abdominal distention, faecal impaction, infective sequelae and increased mortality. There hav
Government/NHS
Imperial College Healthcare NHS Trust
W2 1NY
51,517
-0,174
Dr Parind Patel
Not Provided
Chief Investigator
Oral and Gastrointestinal
6. Evaluation of Treatments and Therapeutic Interventions
6.1 Pharmaceuticals
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
68
13/180/13
As required versus fixed schedule analgesic administration schedules for postoperative pain in children
NIHR (non-ODA)
Research
Complete
Health Technology Assessment
Commissioned
HTA Incentive Scheme (Cochrane)
£10 000
1 juin 2014
28 février 2015
Pain is commonly experienced after surgery. Children tend to rely on a parent or carer to give medication to help relieve the pain. Medication can either be given when the child complains of pain (as required), or 'around the clock' (fixed schedule, e.g. every four hours). In July 2014, we found three studies (randomised controlled trials) of 246 children under the age of 16 years. All studies compared the two ways of giving medicine for pain relief after tonsillectomy (an operation to remove the tonsils). The studies were small, and generally of low quality. One study showed that the children in the 'around the clock' group took more medication, but they did not have better pain relief. There were no differences in pain relief or side effects between the two groups. There was not enough evidence to be sure which method is better for a child's pain relief after surgery. More high quality, large studies are needed.
Background Acute postoperative pain occurs as a result of tissue damage following surgery. Administering the appropriate analgesia to children is a complex process and it is unclear whether children's postoperative pain is more successfully treated by using 'as required' (when pain occurs) (termed 'pro re nata' or PRN) or (irrespective of pain at the time of administration). Objectives To assess the efficacy of as required versus fixed schedule analgesic administration for the management of postoperative pain in children under the age of 16 years. Search methods On 2 July 2014, we searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE, and CINAHL databases. We reviewed the bibliographies of all included studies and of reviews, and searched two clinical trial databases, ClinicalTrials.gov and the World Health Organization (WHO) International Clinical Trials Registry Platform, to identify additional published or unpublished data. Selection cri
Academic
Cochrane Pain, Palliative and Supportive Care Group
OX3 7LJ
51,750
-1,215
Mrs Anna Erskine
Not Provided
Chief Investigator
Generic Health Relevance
6. Evaluation of Treatments and Therapeutic Interventions
6.1 Pharmaceuticals
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
69
15/70/101
Managing medicines for patients with serious illness being cared for at home
NIHR (non-ODA)
Research
Complete
Health and Social Care Delivery Research
Researcher Led
HSDR Researcher Led
£427 188
1 mars 2017
31 décembre 2019
Excellent control of pain and distress for seriously ill and dying patients is one of the most important tasks of health care. This study will explore how patients being cared for at home, their family care givers and the health care professionals who support them, engage collaboratively in managing medicines prescribed for the relief of pain and difficult symptoms for illnesses other than cancer, with particular reference to those from under-served and minority ethnic groups. It will investigate how patients and their family care givers manage complex medication regimes, often involving powerful drugs with potentially harmful side effects and interactions, prescribed for pain and other symptoms. Pain, in particular, is less well controlled at home. Health care professionals are reported to lack confidence in prescribing and administering end of life care medicines, and there can be problems in accessing medicines quickly outside normal working hours. Anticipatory medicines are prescri
The study will explore how patients with serious and terminal illness, their family care givers (FCGs) and the health care professionals (HCPs) who support them, engage collaboratively in managing medicines prescribed for relief of symptoms towards the end of life. It will include a particular focus on patients with conditions other than cancer and from under-served and minority ethnic groups. Effective control of symptoms causing distress and pain is critical to improving the quality of end of life care (EOLC) and supporting patients to die at home(1). FCGs play a critical role in helping patients to manage complex medication regimes, and the difficulties they confront in doing this have not been adequately acknowledged or addressed (2-5). Poor control of symptoms is a likely cause of crises leading to distressing and costly hospital admissions(6,7). Evidence suggests that difficulties persist in all aspects of EOLC medicines management in community settings, from supply and access to
Academic
The University of Nottingham
NG7 2RD
52,941
-1,191
Professor Kristian Pollock
0000-0002-6836-8595
Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
70
17/05/30
Thinking ahead about medical treatments in advanced illness: A qualitative study of barriers and enablers in end-of-life care planning with patients and families from ethnically diverse backgrounds
NIHR (non-ODA)
Research
Complete
Health and Social Care Delivery Research
Researcher Led
HSDR Researcher Led
£453 222
1 novembre 2018
30 septembre 2021
This study will look at how patients with serious illness from Black Asian and Minority Ethnic (BAME) backgrounds, family carers and the doctors and nurses who support them, think ahead about becoming very ill and dying. We want to: •Understand the different approaches people have to this and things that help or prevent conversations and future planning within the family and with doctors and nurses; •Identify how professionals can best support patients and what training is needed to do this. The UK government is committed to providing excellent end of life care for all patients regardless of their illness, where they live or cultural and ethnic background. However, research suggests that patients from BAME communities have less access to end of life care than other sections of the population and many doctors and nurses lack confidence in helping them with end of life care planning. We need to know more about the services that people from different BAME communities would like and how
Background NICE Quality Standards and Guidance require that Health Care Professionals (HCPs) engage in End-of-Life Care Planning (EOLCP) with all dying patients. Enabling choice and equitable access to palliative care are key strategies in government policy but people from Black Asian and Minority Ethnic (BAME) communities are disadvantaged because they access palliative services less and later than other patients. BAME patients are more likely to die in hospital and to receive more intensive treatments at the end of life. Thinking ahead about decisions related to anticipated deterioration may help people be cared for in the way, and in the place, that they prefer. However,little is known about how BAME patients access services and how current policy and practice 'fit' with diverse cultural values and beliefs. Additionally, our past and current work has shown that many HCPs lack confidence both in supporting BAME patients and their families and in engaging in EOLCP. Research question
Government/NHS
University Hospitals Of Leicester NHS Trust
LE1 5WW
52,627
-1,136
Professor Christina Faull
0000-0002-0064-8056
Chief Investigator
Generic Health Relevance
8. Health and Social Care Services Research
8.1 Organisation and delivery of services
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
71
NIHR150376
The FOLLOW UP study - a natural experiment comparing the clinical and cost-effectiveness of follow-up strategies after radical treatment for prostate cancer.
NIHR (non-ODA)
Research
Active
Health Technology Assessment
Commissioned
HTA Commissioned
£1 843 984
1 juillet 2024
30 juin 2028
AIM To identify the best follow-up approach for people with prostate cancer who have had treatment to cure them of cancer. BACKGROUND Over 27,000 people a year in the UK get surgery or radiotherapy to cure their prostate cancer. They then get regular check-ups to manage potential side effects & see if cancer recurs so it can be treated quickly. The organisation of these check-ups varies across the country as we do not know which approach is best. The 4 approaches are: 1. check-ups performed in hospital outpatients by the same team that provided treatment 2. men seen regularly by their GP 3. shared care between general practice & hospital follow-up 4. men supported to provide checks on themselves (self-care) & reaching out to a doctor or a nurse when required Our study will compare these options to establish which is best for patients & makes the best use of NHS resources. METHODS (i) Observational study: Usually when we compare different healthcare options in studies like this, part
QUESTION What is the most clinical & cost-effective follow-up strategy for radically treated prostate cancer? BACKGROUND 27,000 UK patients/yr treated by radical surgery or radiotherapy undergo regular follow-up to manage potential side effects & cancer recurrence using four different approaches: (i) hospital check-ups by the treating team; (ii) primary care check-ups by their GP; (iii) shared care between primary & secondary care; or (iv) patients supported to provide checks on themselves (self-care) & reaching out for help when required. Our study will compare these options to establish which is best for patients & makes the best use of NHS resources. OBJECTIVES 1. Primary objectives - compare for each follow-up strategy at 3 yrs (i) safety defined by time to treatment for cancer recurrence & (ii) estimate cost-effectiveness. 2. Secondary objectives - compare at 3 yrs (i) cancer recurrence, metastases and survival; (ii) cancer recurrence treatments (salvage to cure vs palliative su
Academic
Imperial College London
SW7 2AZ
51,498
-0,177
Professor Rakesh Heer
0000-0003-1952-7462
Chief Investigator
Cancer and neoplasms
7. Management of Diseases and Conditions
7.1 Individual care needs
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
72
NIHR201597
The qualitative DIGNITAL study: Amending and Developing Dignity Therapy forYoung Adults with Life Limiting Conditions
NIHR (non-ODA)
Research
Complete
Research for Patient Benefit
Researcher Led
Research for Patient Benefit
£166 834
1 février 2021
1 août 2022
Thirteen thousand young adults (18 to 24 years old) have life limiting conditions in England. Most receive palliative care. Palliative care supports the well-being of those with shortened lives. There is a need to guide young adults with life limiting conditions to reflect on the meaning and purpose of their lives. Research suggests that Dignity Therapy is well received by older adults, who report less anxiety and depression. Dignity Therapy is an activity whereby an individual has a guided and supportive, recorded conversation with a trained therapist. The therapist encourages talk about happy memories, life lessons and hopes for loved ones. The activity involves a written life reflection. Many share their reflections with family. We asked young adults with life limiting conditions and healthcare professionals to share their thoughts about Dignity Therapy. Young adults said it would help them share their feelings and create something meaningful for them and their families. Healthcar
Background Dignity Therapy (DT) is a validated psycho-therapeutic approach designed to bring about a sense of meaning and purpose for individuals at the end of life, and their families. DT involves facilitating individuals to discuss their valued memories, accomplishments, life lessons, and hopes for significant others. DT has been well received by adult patients and their family members, with research identifying improvements in measures of well-being and the overall quality of life of patients at the end of life. However, DT research has primarily focused on adult patients with cancer. Few studies have included young adults (YA)18-24 years (mean age range 49-65 years) and those with life-limiting conditions (LLC), highlighting a need to begin developing and evaluating a DT based intervention for young adults with LLC (YA/LLC). Aims To amend (with permission already obtained from the DT originator) and develop a DT for YA/LLC (DIGNITAL - Dignity Therapy for Young Adults with Life Li
Government/NHS
University Hospitals of North Midlands NHS Trust
ST4 6QG
53,003
-2,212
Dr Alison Rodriguez
0000-0001-9104-1999
Chief Investigator
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
73
025/0019
Palliative Care Needs of Older People with Heart Failure
NIHR (non-ODA)
Research
Complete
Policy Research Programme
Researcher Led
Policy Research Programme
£227 228
1 mars 2003
30 septembre 2007
BackgroundAimTo provide evidence to determine appropriate national policy responses to improve the quality of life of older people with heart failure (HF) and their families at the end of life.Research groupThe multi-disciplinary research group have extensive experience in conducting research with older people and in palliative care settings.SampleFive hundred people >60 years with heart failure and their informal carer (if available) will be recruited from primary care settings in four demographically contrasting locations across England. Focus groups will be conducted with 70 primary care professionals.MethodsPhase 1: Previously piloted questionnaires will be completed by patients with Heart Failure and their informal carer every 3 months for 12 months. If the patient dies, carers will complete a questionnaire 3 months afterwards. Forty qualitative interviews will be conducted with patients. Phase 2: Ten focus groups will be held with primary care professionals (who provide most
Academic
University of Sheffield
S10 2TN
53,381
-1,489
Dr Merryn Gott
Not Provided
Chief Investigator
Awaiting Health Category Coding
9. Awaiting RAC Coding
9.1 Awaiting RAC Coding
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
74
13/180/08
The impact of morphine, fentanyl or codeine (oxycodone) on patient consciousness, appetite and thirst
NIHR (non-ODA)
Research
Complete
Health Technology Assessment
Commissioned
HTA Incentive Scheme (Cochrane)
£5 000
1 mars 2014
31 mai 2014
Care pathways are packages of care designed to ensure patients have appropriate and effective care. They are commonly used, and often produce good results, but they can also be used as a tick box solution that acts as a barrier to good care. Care pathways have been used to ensure appropriate care for dying people in hospice settings. One, the Liverpool Care Pathway, devised for use in hospices, has been used in general hospital settings to care for dying patients. Its use has been criticised. A review of the use of end-of-life care pathways in the NHS in the UK recommended they be discontinued, one reason being that they were being misused. A concern, mainly raised by relatives, was that opioids were over-prescribed, used to hasten death, to reduce consciousness, and diminish the patient's desire or ability to accept food or drink. This review was commissioned to look at adverse events associated with the use of opioids to treat cancer pain. This clinical trial data set is the most
Background There is increasing focus on providing high quality care for people at the end of life, irrespective of disease or cause, and in all settings. In the last ten years the use of care pathways to aid those treating patients at the end of life has become common worldwide. The use of the Liverpool Care Pathway in the UK has been criticised. In England the LCP was the subject of an independent review, commissioned by a Health Minister. The Neuberger Review acknowledged that the LCP was based on the sound ethical principles that provide the basis of good quality care for patients and families when implemented properly. It also found that the LCP often was not implemented properly, and had instead become a barrier to good care; it made over 40 recommendations, including education and training, research and development, access to specialist palliative care services, and the need to ensure care and compassion for all dying patients. In July 2013, the Department of Health released a s
Academic
Cochrane Pain, Palliative and Supportive Care Group
OX3 7LJ
51,750
-1,215
Professor Christopher Eccleston
0000-0003-0698-1543
Chief Investigator
Generic Health Relevance
6. Evaluation of Treatments and Therapeutic Interventions
6.1 Pharmaceuticals
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
75
NIHR159019
HOPSCOTCH Helping Optimise Primary Care Support During Transition From Children’s Hospice Care
NIHR (non-ODA)
Research
Active
Health and Social Care Delivery Research
Commissioned
HSDR Commissioned
£960 522
1 septembre 2024
31 août 2027
Plain English Summary There are more than 86000 children and young people living with a condition that will shorten their life in England. [1] Many children with life limiting conditions are cared for by children’s hospices. Until recently the care provided by children’s hospices often started in infancy and extended into adulthood. Young people were not discharged from children’s palliative care services irrespective of age. This model of care is no longer possible due to the rapidly growing population of young people with life limiting conditions and their increased life expectancy.[2,3] As children with life limiting conditions become young adults they now leave the care of children’s hospices and move into the care of adult healthcare services. In 2022 an amendment to the human rights bill made access to palliative care a human right. Despite this young people with life limiting conditions do not have the same access to palliative care as children and older adults with life limit
Research Questions What do young people with life limiting conditions and health care professionals think are the key components of an intervention to support primary care involvement in transition to adult services and how feasible is the intervention in practice? Background There are more than 86000 children and young people living with a condition that will shorten their life in England. [1] . Until recently the care provided by children’s hospices often started in infancy and extended into adulthood. This model of care is no longer possible due to the rapidly growing population of young people with life limiting conditions and their increased life expectancy. [2,3] As young people approach adulthood they are required to leave children’s hospices and move into the care of adult healthcare services. In 2022 an amendment to the human rights bill made access to palliative care a human right. Despite this young people with life limiting conditions are facing increasing inequitie
Academic
University of Leeds
LS2 9JT
53,808
-1,553
Dr Sarah Mitchell/Professor Lucy Ziegler
0000-0002-1477-7860/0000-0001-9563-5014
Joint Lead Applicant/Chief Investigator
Generic Health Relevance
8. Health and Social Care Services Research
8.1 Organisation and delivery of services
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
76
CAT CL09-03
Family distress and grieving in EoLC in Critical Care: causes, consequences and interventions.
Non-NIHR funding
Training
Complete
HEE/NIHR Integrated Clinical and Practitioner Academic Programme
Trainee Development
NIHR/HEE CAT Clinical Lectureship
£146 241
1 mars 2010
31 août 2012
Training Award
This study will explore families’ experiences of end of life care in Critical Care. Little is known about whether family grieving is impacted on by how people die in Critical Care. Through understanding family experiences in these situations, specific approaches could be developed to better support grieving and bereaved families.Working alongside experienced doctors and nurses in palliative care, and studying new skills and knowledge will also help inform this project, and be brought into my everyday practice when caring for families of the critically ill. End of life care is an emotive, complex and yet, vitally important issue. This work will help us understand what families find most distressing in end of life care. We can then use this to train staff to talk more helpfully with family members, and ensure that areas of care and support, important to grieving and bereaved families, receive the highest level of attention.
Government/NHS
University Hospital Southampton NHS Foundation Trust
SO16 6YD
50,933
-1,435
Dr Maureen Coombs
Not Provided
Award Holder
Disputed aetiology and other
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
77
15/10/11
The Namaste Care intervention to improve the quality of dying for people with advanced dementia living in care homes: A realist review and feasibility study for a cluster randomised controlled trial
NIHR (non-ODA)
Research
Complete
Health Technology Assessment
Researcher Led
HTA Clinical Trials & Evaluation
£507 531
1 décembre 2016
31 mars 2019
Aims of the research This project aims to identify if it is feasible to: (1) introduce a new programme (Namaste Care) to improve the quality of dying at the end of life for care home residents with dementia; (2) undertake a trial in care homes to establish if Namaste Care makes a difference to the care of people dying with advanced dementia. Background to the research For many people with dementia, a move into a care home occurs. This is likely to be where they die. People with dementia rarely access specialist palliative care services, although they have palliative care needs. Namaste Care has been developed to provide care for people with advanced dementia at the end of life. It takes place in a prepared group space, where people receive daily individualised comfort assessment and care. A structured approach to care, provided by the usual staff (four hours a day, seven-days a week), engages the individual’s senses, offering meaningful activities that reflect their interests.
Background: Many people with advanced dementia live and die in nursing care homes (NCHs). The quality of life, care and dying experienced is variable. There is a need to identify appropriate, cost effective interventions that facilitate high quality end of life care provision appropriate for this population. Aim: To establish the feasibility of conducting a cluster controlled trial in nursing care homes to understand the impact on quality of dying of the Namaste Care intervention for people with advanced dementia, compared to usual end of life care. Design: a) Realist Evidence review: To determine which Namaste care intervention elements work best for people dying with advanced dementia in the NCH context. b) Intervention Refinement: Consultation workshop with care home staff (n=8-12 from 4 NCHs) and family members of people with advanced dementia, using findings from the Realist Review to refine the Namaste Care intervention. c) Feasibilty study in context of a cluste
Academic
Lancaster University
LA1 4YW
54,010
-2,786
Professor Katherine Froggatt
0000-0003-0339-3877
Chief Investigator
Neurological
7. Management of Diseases and Conditions
7.2 End of life care
Dementia
Award does not have an ODA Downstream Partner
78
14/28/02
CReST 2 - Colorectal Endoscopic Stenting Trial 2
NIHR (non-ODA)
Research
Active
Health Technology Assessment
Commissioned
HTA Commissioned
£1 147 565
1 juillet 2016
30 avril 2025
The 2014 National Bowel Cancer Audit has shown that up to 40% of patients who develop colorectal cancer are either not fit enough to have the cancer removed surgically or the cancer is too advanced to cure. Treatment in these patients is called palliative and is aimed at prolonging life and maximising quality of life (in terms of well-being, health including fitness and sexual health). A significant proportion of patients with colorectal cancer present as an emergency, where the cancer has caused a blockage of their bowel. Unless the blockage is relieved, the bowel would perforate and the patient would develop peritonitis. Surgery to remove the obstruction, if performed, is associated with increased mortality rate, prolonged stay in hospital, increased need for stoma formation (whereby the bowel is brought to the surface of the abdominal wall and opened and bowel content is collected into a bag which covers the opening), reduced patient quality of life and patients are often unable
Introduction Non resection rates for colorectal cancer in the UK are 40%. In nearly all cases the disease is incurable or the patient not fit for major surgery. About 15% of patients with colorectal cancer present as an emergency with large bowel obstruction and require emergency treatment. Surgery is associated with increased mortality rate, prolonged stay in hospital, need for stoma formation and reduced patient quality of life. Stenting is an effective means of achieving immediate relief of obstruction. In palliative patients the stent is left in situ indefinitely. In this group of patients complication rates are in excess of 30%. Stent design, uncovered versus covered may affect complication rates and quality of life. Design A blinded, multi-centre randomised controlled trial with an internal pilot to assess recruitment, of covered versus uncovered colonic stents. The patient and clinifian assessing responsible for follow-up will both be blinded. The primary outcome measure i
Government/NHS
Manchester University NHS Foundation Trust
M13 9WL
53,462
-2,228
Professor James Hill
0000-0002-0057-1570
Chief Investigator
Cancer and neoplasms
6. Evaluation of Treatments and Therapeutic Interventions
6.3 Medical devices
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
79
NIHR159160
Developing effective service models for Adult Palliative and end of life care for People with a Learning disability (DAPPLE)
NIHR (non-ODA)
Research
Active
Health and Social Care Delivery Research
Commissioned
HSDR Commissioned
£1 961 343
1 septembre 2024
31 août 2027
AIMS OF THE RESEARCH Our study aims to improve the quality and accessibility of Palliative and End Of Life Care (PEOLC) for people with learning disabilities . BACKGROUND TO THE RESEARCH About 1 million people in England have a learning disability. They experience stark health inequalities, dying on average 22 years earlier than the general population. They do not have equal access to palliative care services. Their PEOLC needs are often unrecognized or not addressed, contributing to poorer, often avoidable outcomes. Identifying when someone with a learning disability approaches the last year of life is particularly difficult. Once the need is identified, providing high quality PEOLC can be challenging. These challenges include complex health needs, communication difficulties and a lack of understanding of a learning disability among healthcare professionals. DESIGN AND METHODS USED We will: 1. Use national electronic databases, to look at differences between people with and
RESEARCH QUESTIONS 1. What are the service delivery models and interventions within health and social care services that (a) enable timely identification of the Palliative and End Of Life Care (PEOLC) needs of people with a learning disability, and (b) are effective in meeting those needs? 2. Within a range of service exemplars, what are the barriers and enablers to providing accessible, high quality PEOLC to people with a learning disability; and what are the replicable elements of good practice? BACKGROUND National mortality reviews show that the deaths of people with a learning disability are often unplanned for and poorly managed. Several policy makers have recognised unacceptable inequities PEOLC provision for people with a learning disability. There have been no studies into the availability, nature or effectiveness of service models or interventions. AIMS To improve accessibility and quality of PEOLC for people with a learning disability by producing robust guidance for he
Academic
Kingston University
KT1 1LQ
51,406
-0,308
Professor Irene Tuffrey-Wijne/Dr Rebecca Anderson-Kittow
0000-0002-7288-9529/0000-0002-7095-8914
Chief Investigator/Joint Lead Applicant
Mental Health
7. Management of Diseases and Conditions/8. Health and Social Care Services Research
7.2 End of life care/8.1 Organisation and delivery of services
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
80
NIHR303738
Difficult conversations in the emergency department: how do senior emergency clinicians communicate with patients and relatives about serious diagnoses, palliative treatments and death? An analysis of video recordings using Conversation Analysis and development of educational resources
NIHR (non-ODA)
Training
Active
NIHR Fellowships
Trainee Development
Doctoral Fellowship
£552 687
1 septembre 2024
31 août 2027
Background: The way bad news is delivered is often a key memory for patients and relatives. Ensuring staff get it right first time is incredibly important. There are various resources available for staff about best practice for breaking bad news regarding serious diagnoses, end of life discussions or informing a loved one that their relative has died (difficult conversations), but very few are developed specifically for the emergency department (ED). Whilst existing resources are good they are not directly relevant to the situations in the ED. The main part of this Fellowship will use a process that has already been established in palliative care communication skills training. This is recording real palliative care consultations and identifying key themes of best practice using a technique called Conversation Analysis. We will record difficult conversations between patients or relatives and senior experienced clinicians (doctors, Advanced Clinical Practitioners, nurses) in the ED. The
Research questions How do emergency clinicians engage in cifficult conversations in the emergency department and what are the perspectives of patients, relatives and clinicians with regard to difficult conversations in the ED. Background The number of people who died in emergency departments (ED) is increasing, whilst the proportion of cancer diagnoses made in the ED is also rising. Delivering the news of either the death of a relative or a serious diagnosis (difficult conversations) is an important skill for those working in emergency medicine, but teaching is often neglected. The current resources available are extrapolated from non-emergency settings and there is little understanding of how these conversations develop and are navigated by emergency clinicians. Conversation Analysis is a qualitative research tool which utilises video recordings of interactions to facilitate understanding of the complex interplay of conversation in a variety of situations. It has been employed in de
Government/NHS
University Hospitals of Derby and Burton NHS Foundation Trust
DE22 3NE
52,910
-1,514
Dr Graham Johnson
0000-0001-6004-6244
Award Holder
Generic Health Relevance
7. Management of Diseases and Conditions
7.2 End of life care
Award not coded to a curated portfolio
Award does not have an ODA Downstream Partner
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