186
registres
Palliative and End of Life Care Research, Marie Curie and NIHR portfolio (2011-2018/19)
Award Ref: | Title | Abstract | SummaryOfResearch / Lay Summary | Lead Applicant | Organisation | Award Amount | Start Date | End Date | HOSPITAL | HOSPICE | HOME | CARE HOME | PRIMARY CARE | SOCIAL CARE | COMMUNITY (not mentioned) | TRANSITIONS | OTHER | NOT MENTIONED | OTHER MENTIONED |
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Award Ref: | Title | Abstract | SummaryOfResearch / Lay Summary | Lead Applicant | Organisation | Award Amount | Start Date | End Date | HOSPITAL | HOSPICE | HOME | CARE HOME | PRIMARY CARE | SOCIAL CARE | COMMUNITY (not mentioned) | TRANSITIONS | OTHER | NOT MENTIONED | OTHER MENTIONED | |
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1 | RP-PG-0606-1005 | Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life. | Aims and objectives To assemble a community cohort of people with dementia and their families, within which intervention studies can be nested. The objectives are to develop and test interventions that improve patient, carer and service outcomes at three major stages of dementia: 1) recognition and first response; 2) management of behavioural and psychological symptoms of dementia (BPSD), and of incontinence; and 3) end of life care. The programme will also evaluate the impact of the Mental Capacity Act 2005, and develop educational interventions to support the use of the Act. Background: Dementia has an enormous impact on the lives of individuals and families, and on health and social services, and this will increase as the population ages. The needs of people with dementia and their carers’ for information and support are inadequately addressed at all key points in the illness trajectory. The consequences are poor quality of life, inappropriate and costly responses to the problems th | Most people with dementia rely upon community services, from general practice, social services and care homes, for their care. Specialist services, although crucial to diagnosis and some aspect of continuing care, are less prominent. However, the needs of people with dementia and their carers’ for information about symptom management and access to services are inadequately addressed at all key points in the illness trajectory, from diagnosis through to end of life care. This research and development programme is designed to change this situation. It is based in the community, and lead by primary care, to address the problems that community services have directly. It will be carried out largely in the culturally diverse communities of North West London, but we believe its lessons will be applicable in all communities. It assembles an academic support team with expertise in dementia care, who have worked together on research projects in dementia, and who bring different research and deve | Professor Steve Iliffe | Central and North West London NHS Foundation Trust | £2,080,666 | 8 de gener de 2007 | 31 de gener de 2013 | Not mentioned | Not mentioned | Yes | Yes | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | NA | NA |
2 | 09/33/02 | CanTalk: the clinical and cost effectiveness of CBT plus treatment as usual for the treatment of depression in advanced cancer; a randomised controlled trial | There are high rates of depression in people with advanced cancer, which worsens the individual’s quality of life, can become a psychological burden for carers and prolong a patient’s stay in hospital. This research call aims to determine whether the addition of a psychological therapy to a patient’s usual care will improve depression, reduce the costs to the NHS and society and also benefit carers. Cognitive behaviour therapy (CBT), which aims to modify negative thinking and unhelpful behaviours, is a well recognised psychological treatment, is one of the best treatments for depression, and although promising for patients with depression and advanced cancer, remains to be fully evaluated in this group. In accordance with the call, we plan to see whether (i) the addition of CBT Treatment As Usual (TAU) is more effective than (ii) TAU alone. We will take into account whether participants are currently taking an antidepressant, as this may affect the response to treatment. Suitable parti | Title - CanTalk: the clinical and cost effectiveness of the addition of CBT to treatment as usual (TAU) for depression in advanced cancer: a randomised controlled trial. Background - Depression is one of the most prevalent mental disorders in patients with cancer (McDaniel 1995). It can affect the patient’s quality of life and that of their carers (Alexander 1993). It may also prolong hospitalisation and increase healthcare costs (Bowes and Boyle 2003). In those with advanced cancer untreated depression is associated with early death (Lloyd Williams et al). CBT is one of the most effective psychological interventions used to treat depression. Aim(s) - To conduct an RCT to determine the clinical and cost effectiveness of CBT plus TAU compared to TAU for depression in adults with cancer that is no longer amenable to curative treatment. Method(s) - 240 patients will be recruited from Oncology clinics and GP practices following screening to confirm a depression diagnosis. Patients will be | Dr Marc Serfaty | University College London | £1,658,152 | 3 de gener de 2012 | 30 de novembre de 2016 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | Not mentioned | Yes | Not mentioned | Not mentioned | NA | NA |
3 | 12/130/53 | An evaluation of the effectiveness of 'care bundles' as a means of improving hospital care and reducing hospital re-admission for patients with chronic obstructive pulmonary disease (COPD) | Avoiding unnecessary use of emergency hospital services is one of the biggest challenges currently facing the National Health Service. Many initiatives have already been set up to try to tackle the problem and yet the number of people admitted to hospital at short notice continues to rise. Chronic obstructive pulmonary disease (COPD) is the name for a collection of long-term conditions that affect the lungs. It is one of the most common respiratory diseases in the United Kingdom and accounts for 10% of hospital admissions each year. Nearly a third of these patients are re-admitted to hospital within 28 days of discharge. We think that use of COPD 'care bundles' could play a key role in resolving the issue of unplanned admissions. 'Care bundles' are a way of ensuring that staff are able to provide a co-ordinated package of care to patients with COPD at the point that they arrive at or are sent home from hospital. This study will measure the effect of introducing COPD 'care bundles' as p | This research seeks to evaluate the effectiveness of 'care bundles' as a means of improving hospital care and reducing re-admission for patients with chronic obstructive pulmonary disease (COPD). It is designed as a controlled before-and-after study with nested qualitative case-studies. The population of interest is that group of people admitted to hospital with an acute exacerbation of COPD as their primary condition. The intervention considers the effect of delivering COPD 'care bundles' at both the point of admission and discharge - where a 'care bundle' is defined as "a number of components of care grouped and pro-actively managed into clinical pathways". The study will compare 20 NHS trusts who implement a COPD 'care bundle' and a matched comparator group of 20 NHS trusts who deliver usual care during the study period. From this initial set of 40 participating sites, a stratified random sample of 8 implementation trusts will be recruited, with 8 comparators, for in-depth quantitat | Professor Sarah Purdy | Bristol NHS CCG | £891,082 | 5 de gener de 2014 | 31 d'agost de 2017 | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | Not mentioned | Not mentioned | NA | NA |
4 | 13/180/03 | Medically assisted nutrition for palliative care in adult patients | 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 benefits a | 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 and analysis: W | Dr Phillip Good | Cochrane Pain, Palliative and Supportive Care Group | £2,500 | 2 de gener de 2014 | 30 d'abril de 2014 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | NA |
5 | 14/175/05 | Opioids for the palliation of refractory breathlessness in adults with advanced disease and terminal illness | N/A | This review update aims to determine the effectiveness of opioids in relieving breathlessness, affecting up to 90% of those with advanced COPD (over 1 million GB people), 90% of those with lung cancer (40,000 new cases in UK/year), advanced heart failure (750,000 UK people) and many other conditions, as well as affecting families and carers. Some doctors and patients still question the efficacy of opioids and remain concerned about side effects. Much of the current literature are narrative reviews and opinion pieces and a systematic review is required to examine the quality of evidence from RCTs, and to evaluate symptom control, quality of life and to assess adverse effects. The present review will build on a previous review, adding further studies, mechanisms of action, and assessment of quality. Deriving evidence from a currently withdrawn review may provide misleading information to doctors and patients. It is anticipated a further 10 trials may be included as well as 9 trials curre | Professor Christopher Eccleston | Cochrane Pain, Palliative and Supportive Care Group | £5,000 | 1 de gener de 2015 | 31 de març de 2016 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | NA |
6 | MCCC-RP-12-A13575 | Identifying patients who would benefit from palliative care, irrespective of diagnosis: the development and feasibility testing of a primary care-based intervention | People's experience of care at the end of life varies greatly by diagnosis. Recognising when patients with non-malignant illness need supportive and palliative care is a prerequisite for effective and equitable end of life care for this disadvantaged group. Primary care teams are well placed to use their increasingly sophisticated computerised databases and search facilities to identify and consider all such patients for palliative care based on pragmatic clinical and other criteria. Aims To develop and test a primary-care based intervention to identify patients who might benefit from earlier supportive and palliative care. Methods We will develop a two-stage identification process: 1) Development and running of GP computer searches to identify patients with supportive and palliative care needs using criteria in the refined SPICT, as recorded in patient electronic records (VISION and EMIS): Patients will be purposively selected across the cancer, organ failure and frailty trajectories; | N/A | Professor Scott Murray | University of Edinburgh | £116,895.23 | 5 de gener de 2012 | 31 de maig de 2014 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | NA | NA |
7 | MCCC-RP-16-A20999 | Supporting people bereaved through advanced illness: A systematic review of the evidence and development of a core outcome set for bereavement research in palliative care | Organisations which provide palliative and end of life care have an important role to play in providing bereavement support to the loved ones of patients. However, despite the existence of diverse providers, there is a deficit of systematic reviews and evidence based guidance on the key components of bereavement service provision and outcomes in palliative care. Heterogeneity in outcomes and measures used in bereavement research further limits the comparability and utility of studies for informing practice. The development of a core outcome set (COS) is a means of improving the evidence base for clinical interventions. The COS represents the ‘minimum that should be measured and reported in all clinical trials of a specific condition’ [www.comet-initiative.org], thus making it easier for the results of studies to be compared, contrasted and combined. Objectives This project has two main objectives; 1. To systematically review the evidence on supportive interventions for people bereaved | Research summary
Organisations which provide palliative and end of life care have an important role to play in providing bereavement support to people who have lost a loved one through terminal illness.
Dr Emily Harrop from Cardiff University is looking at the types of bereavement support available to people who have a lost a loved one, including who these are aimed at, how well they meet the needs of different groups of people and how much they cost and potentially save the NHS.
By identifying what type of support works best for different groups of people and how this can be improved, this study can change the way bereavement support services are provided.
The findings of this evidence review will be shared with policy makers, academics, health and social care professionals and people who have experienced bereavement. The aim of this is to develop a set of outcomes that can be used to guide future research on bereavement support. | Dr Emily Harrop | Cardiff University | £83,489.95 | 2 de gener de 2016 | 30 d'abril de 2018 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | NA |
8 | 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). | 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 caregivers provid | 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 the elde | Professor Jessica Corner | University Hospital Southampton NHS Foundation Trust | £90,691 | 11 de juliol de 2014 | 5 de juliol de 2016 | Not mentioned | Not mentioned | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | NA | NA |
9 | 15/10/17 | ImproveCare: The management of clinical uncertainty in end of life care - a feasibility cluster RCT | Background to research: In this country approx 500,000 people die each year. Over half of these deaths take place in hospital. However, research tells us that most people would prefer to die at home. This does not happen because there is often little discussion between patients, families, and health care professionals about what they want. It is made worse when it is difficult for health care staff to identify patients whose situation is clinically uncertain. Uncertainty is not a simple concept; it usually results from several inter-related factors that include unpredictability and complexity. We know that many health care professionals do not possess enough knowledge or skills on how to best care for them in their last few weeks of life, particularly for those where uncertainty is present. Recent reports have highlighted what can go wrong in the presence of clinical uncertainty and at the end of life; it has devastating effects for patients and families at a profoundly emotional level | DESIGN: Feasibility cluster RCT with concurrent qualitative component following MRC & MORCare guidance to develop/evaluate complex interventions in end of life care to inform definitive cluster RCT. SETTING: General medical wards in 4 district general hospitals. TATGET POPULATION: Patients (pts) identified as deteriorating, clinically unstable, with limited/uncertain reversibility of illness, at risk of dying in 1-2 months, and their families. Health technologies assessed: AMBER care bundle (ACB) provides systematic approach to care of hospital pts whose recovery is clinically uncertain and at risk of dying in 1–2 months. It fits any diagnostic group. For those in this position staff are required to i) develop medical plan of management documenting disease interventions & current key issues (usual practice), and anticipated outcomes, pt/carer priorities, and resuscitation status; ii) identify if an escalation plan for future care has been documented (ward only/high dependency/intensive | Dr Jonathan Koffman | King's College Hospital NHS Foundation Trust | £261,163 | 1 de gener de 2017 | 31 de març de 2018 | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | NA | NA |
10 | 15/70/101 | Managing medicines for patients with serious illness being cared for at home | 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 | Dr Kristian Pollock | The University of Nottingham | £456,499 | 3 de gener de 2017 | 31 d'agost de 2019 | Not mentioned | Not mentioned | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | NA | NA |
11 | 13/180/04 | Medically assisted hydration for adult palliative care patients | 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 not show | 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 controlled studies | Dr Phillip Good | Cochrane Pain, Palliative and Supportive Care Group | £2,500 | 2 de gener de 2014 | 30 d'abril de 2014 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | NA |
12 | 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. | 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. Th | 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 and | Ms Imogen Featherstone | University of York | £283,587 | 1 de gener de 2018 | 31 de desembre de 2022 | Not mentioned | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | NA | NA |
13 | P63 | Supporting carers providing end of life care during the transition from hospital to their family member’s preferred place of care. A participatory learning and action research study | Most people at the end of life depend on a family member or close friend to provide the care they need. At least half a million people in England provide this care. We know that family members consider this work morally important but it is undeniably difficult work, physically and emotionally. There is political will to support family carers providing end of life care but we know from a national survey that only half receive the help they need. There is also a political commitment to develop social care services for end of life care. There are good local projects but a recent study did not find any service models capable of guiding further development. There is also good quality research about carers’ needs and the kind of support they find helpful, but we do not know how possible it is to provide this help in particular circumstances. The circumstance in which we have particular interest is the period between hospital and the intended place for end of life care. We think this period i | There is robust evidence about the support needs of carers providing end of life care and how this can be provided. However, a recent national survey of carers found that only half received the support they needed. Appropriate support was less likely to be provided in hospital. Our aim is to develop a service model for the provision of support to carers providing end of life care. Using participatory learning and action methodology we will embed carer support into the practice of ten hospital end of life care teams, guided by Normative Process Theory, a sociological theory of implementation. We will co-produce the service model from the knowledge gained from the implementation phases of the project. The service model will consist of: 1) a detailed description of an evidence based carer intervention, tailored for carers supporting a person being transferred from hospital to their preferred place for end of life care. 2) a detailed description and analysis of the ways in which the interv | Susan Duke | £328,146 | 9 de gener de 2015 | 31 d'agost de 2018 | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | Not mentioned | NA | NA | |
14 | DCMC-RF-12-08 | Cascading knowledge about end of life care at home: the development and piloting of a training programme for those who help carers and a carer resource pack | Caregivers of patients approaching the end of life assume a great responsibility in ensuring that their relative or friend has appropriate care, often carrying out many aspects of care themselves. They often experience substantial difficulties; not least because the experience is likely to be unknown territory. This study seeks to provide an innovative means of addressing these issues by the development and piloting of a training programme for volunteers (who may include experienced or bereaved carers) as well as carer support workers, to enable them to cascade their learning to unpaid carers providing end of life care at home and to whom they provide mentorship and support. An associated resource pack will be developed for carers to enable reflection on their needs and access to relevant information judged as helpful by experienced carers (research partners: see below). The aims of the project are thus: • To develop and pilot a training programme for volunteers and support workers who | N/A | Professor Jane Seymour | University of Nottingham | £99,972.00 | 12 de gener de 2012 | 30 de juny de 2015 | Not mentioned | Not mentioned | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | NA | NA |
15 | MCCC-FCO-10-U | Marie Curie Palliative Care Research Department, University College London | The Marie Curie Palliative Care Research Unit (MCPCRU) is based in the Department of Mental Health Sciences at University College London. Its main current research themes include: 1) evaluation of effectiveness of interventions for patients and carers in palliative care, 2) end-of-life care planning 3) assessment of and treatments for psychological need, 4) rehabilitation in people with advanced illness 5) patient and carer needs in advanced dementia, 6) end stage renal disease, 7) palliative care in other advanced non-cancer conditions, 8) systematic reviews, 9) palliative care for children and young people in particular those aged 15-25 years. Previous work has included large scale cohort studies and randomised trials for example in continuity of care and spirituality. The objective of the MCPCRU is to foster high-quality research which will lead to improvements in care for those affected by cancer and other life threatening illnesses through the implementation of evidence-based prac | N/A | Dr Louise Jones | University College London | £593,388.00 | 1 de gener de 2011 | 31 de desembre de 2011 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | NA |
16 | MCCC-FCO-14-C | Marie Curie Palliative Care Research Centre, Cardiff University | The Marie Curie Palliative Care Research Centre aims to improve the care and well being of patients and families affected by progressive, life-threatening illness. We will achieve this by: 3. Undertaking high quality research of national priority which is directly relevant to patient and carer needs. 4. Demonstrating impact through knowledge transfer and mobilization, effecting the translation of research findings into clinical practice and policy implementation. Our alignment within robust and forward looking academic research infrastructures at both national and institutional levels will allow us to proceed from a position of methodological and collaborative strength. We will provide Wales and UK leadership in study design and implementation and be to the fore in innovative approaches to Patient and Public Involvement (PPI) and knowledge mobilization across clinical services. We have purposefully developed a distinctive combination of specific methodological expertise, and strong lea | N/A | Professor Anthony Byrne | Cardiff University | £1,130,226.00 | 4 de gener de 2014 | 31 de març de 2017 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | NA |
17 | PB-PG-0614-34007 | HIDDEN: Hospice Inpatient Deep vein thrombosis Detection study | Background Venous thromboembolism (VTE) affects an estimated 4-20% of patients with cancer during the course of their illness; the true frequency is unknown as VTE can be asymptomatic. There are UK guidelines for the prevention of VTE in cancer patients admitted to hospital but we do not know whether they should be applied to advanced cancer patients admitted to specialist palliative care units (SPCU) such as hospices. There is little evidence regarding the prevalence and incidence of VTE in these patients or whether there are symptom control, quality of life and survival benefits of VTE prevention and treatment, although we do know that patients with advanced cancer have a higher risk of bleeding with anticoagulant treatment of VTE than those with early stage disease. Establishing the true prevalence of DVT and associations with relevant symptoms and outcomes would help to inform the clinical management of patients with advanced cancer admitted to SPCUs. Aims and Objectives Aims The p | Up to one in five cancer patients will develop blood clots in their veins known as deep vein thrombosis (DVT). A clot may break off from the DVT and travel to the lungs; known as a pulmonary embolism (PE). We do not know the true number of DVTS and PE as they may not cause symptoms. Neither do we know whether apparently “silent” DVTs, if untreated, go away by themselves, or go on to cause serious problems like swollen, painful legs (DVT), or chest pain, breathlessness, collapse or death (PE). There are national treatment recommendations to prevent DVT in cancer patients admitted to hospital. However, we do not know whether these should apply to patients with advanced cancer admitted to specialist palliative care units (SPCU) such as hospices, as treatment may not alter how long patients have to live or improve symptoms and quality of life. We do not know if good effects outweigh side-effects of treatment (e.g. bleeding) in these patients. The aim of the HIDDen study is to f | Professor Miriam Johnson | York Teaching Hospital NHS Foundation Trust | £294,658 | 27 de maig de 2016 | 27 de maig de 2018 | Not mentioned | Yes | Not mentioned | Not mentioned | not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | NA | NA |
18 | PB-PG-1111-26043 | The addition of ACT or a Talking Control to treatment as usual for the management of dysfunction in advanced cancer: a feasibility randomised controlled trial | (i) Background: Cancer is a major cause of physical and psychological morbidity and mortality. Conventional psychological interventions aim to alleviate distress and improve function, but may be less effective for those with chronic disease and intractable physical symptoms. Acceptance and Commitment Therapy (ACT), encourages individuals to be willing to experience negative emotions and thoughts (acceptance) and engage in positive behaviours (committed action) and may have potential in the management of chronic physical conditions. Non-specific factors in therapy, for example receiving an intervention which is preferred, credible and empathic or improvement with time may affect outcomes, complicating the outcome of a specific intervention such as ACT. We have therefore chosen a three arm trial comparing ACT with a talking control (TC), developed in our previous work (Serfaty et al, 2009) to allow for the main non-specific factors in therapy. Treatment as usual (TAU) should control for | One third of people with cancer experience psychological distress and may suppress distressing thoughts, emotions and concerns, leading to further problems. Conventional psychological treatments reduce distress by problem-solving, but in advanced cancer, physical and psychological difficulties are complex and may not have simple solutions. Acceptance and Commitment Therapy (ACT) encourages acknowledgement and acceptance of mental experiences, increasing people’s ability to work with problems that cannot be solved. Our pilot work in advanced cancer confirms that distress is associated with difficulties in experiencing uncomfortable thoughts and emotions. The next step is to apply ACT to help people tolerate negative experiences and learn new coping strategies. We shall test if we can recruit, into a trial of ACT, 54 adults with advanced cancer attending out-patient clinics for palliative care. As improvement may be due to spending time with a therapist, we shall compare ACT to a s | Dr Marc Serfaty | Camden and Islington NHS Foundation Trust | £219,271 | 5 de novembre de 2015 | 11 de juny de 2017 | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | NA | NA |
19 | 11/2004/29 | Decision making about implantation of cardioverter defibrillators (ICDs) and deactivation during end of life care | Patients with heart problems may be at risk of sudden death and can be protected by treatment with drugs or ICDs. ICDs are devices, implanted in the chest wall, that monitor the heart and deliver electrical shocks to restore the heart’s natural rhythm. ICDs can improve survival and quality of life, but are associated with a number of negative effects including unnecessary shocks, increased hospital stays, anxiety and depression, as well as complications such as infection. Shocks are described as painful and distressing, like “being kicked in the chest by a horse”. Patients with advanced heart failure and others with terminal conditions close to the end of their lives can experience unnecessary pain, suffering and distress from shocks. In such circumstances, turning off the ICD (deactivation) is likely to make the patient more comfortable. Little is known about how patients make sense of information about ICDs and what patients’ information needs and preferences are, both before implant | Implantable cardioverter defibrillators (ICDs) prevent sudden cardiac death in patients at high risk (primary prevention) and in survivors of cardiac arrest (secondary prevention). ICDs are effective at improving overall survival but have a range of adverse effects including inappropriate shocks, increased hospitalisations, anxiety and depression. One of the main concerns is the capacity of the ICD to prolong the dying process, and cause unnecessary pain and distress to the patient towards the end of their life. Yet it is unclear if, how and when the issue of deactivation is communicated to ICD recipients. We also do not know what types of information or support patients and their family members need in order to make implantation and deactivation decisions. To date, much of the published literature is concerned with what happens in specialist centres with little consideration of earlier stages of decision making in secondary care. The dual focus of this project, on both ICD implantatio | Professor Richard Thomson | University of Newcastle upon Tyne | £221,456 | 5 de gener de 2013 | 31 d'octubre de 2015 | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | NA | NA |
20 | DRF-2014-07-065 | Palliative Care for Children and Young People with Life-Limiting Conditions: What? When? How? | BackgroundCurrent 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 QuestionsHow 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 delivery o | 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. | Dr Sarah Mitchell | University of Warwick | £412,217 | 11 de gener de 2014 | 31 d'octubre de 2019 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | NA |
21 | DRF-2012-05-769 | Understanding and improving the quality of end-of-life care for patients with end-stage liver disease; a longitudinal study of symptoms and experience. | End-stage liver disease (ESLD) is the fifth most common cause of death. This study aims to understand the needs of peoplewith ESLD over time and how they are addressed. Using questionnaires we will ask patients about their symptoms, how badthey are and what help they need. We will talk to a smaller number of patients and carers about their experiences in depth.We suspect that ESLD patients have severe symptoms that are not currently being treated well, with worse end-of-life careand increased NHS costs. Our results will highlight ways to improve care for ESLD. | Training Award | Dr Stephen Kriese | King's College London | £266,926 | 11 de gener de 2012 | 31 d'octubre de 2015 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | NA |
22 | MCCC-FPR-11-U | The Marie Curie Dementia Research Programme: developing an intervention to improve end of life care in advanced dementia | Background: In the United Kingdom (UK) 600,000 people have dementia, increasing to 1.2 million by 2050; 1/3 of people aged over 65 will die with dementia. Detailed research on the symptom burden and needs of people with advanced dementia at the end of life, and their carers, is lacking in UK; access to good end of life care is poor. Aim: To develop and pilot a complex intervention to improve end of life care for people with advanced dementia. Objectives: 1. To understand in-depth the symptoms, health and social care needs of people with advanced dementia; current pathways of care at the end of life, and needs of informal carers at this time and in bereavement. 2. To develop a complex intervention to improve care including: explanations of its core components; how it may operate in different settings (transferability); cost effectiveness; what works for whom in what circumstances and why. 3. To pilot the intervention in one site, collecting data to inform a future definitive trial. Meth | N/A | Dr Louise Jones | University College London | £1,048,507.00 | 1 de gener de 2012 | 31 de desembre de 2014 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | NA |
23 | MCCC-RP-13-A15606 | Both sides of the fence: using action research to improve end of life care for prisoners | The End of Life Care Strategy recommends that high quality end of life care should be available to anyone who needs it, including those in prison. The provision of high quality care for the ageing population of prisoners with end of life care needs requires staff from inside and outside the prison to find ways of working across this interface. Aim The aim of this research is to improve end of life care for prisoners, by devising a transferable model of integrated end of life care that involves prison staff and specialist palliative care staff, to enhance the delivery of high quality care for prisoners with palliative care needs. Methods The study will use participatory action research, which describes, interprets and explains social situations whilst implementing and evaluating changes aimed at improving practice. Staff from specialist palliative care and a high security prison, with guidance and facilitation from a researcher, will be active participants in this three-phased study. Ph | N/A | Dr Mary Turner | Lancaster University | £170,298.42 | 6 de gener de 2013 | 31 de maig de 2016 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | NA | Prison settings |
24 | MCRGS-20171219-8005 | Development and pilot testing of a web-based decision aid for people with motor neurone disease considering a gastrostomy | Background
Dysphagia will affect at least two-thirds of all people with motor neurone disease (MND) during the course of their illness[1]. When dysphagia causes weight loss in patients with MND a gastrostomy is recommended, based on the assumption that there will be a beneficial impact on nutritional outcome and quality of life (QOL)[2, 3]. However, there are no randomised controlled trials (RCTs) which explore the efficacy of enteral tube feeding and results from other research is equivocal, weak or lacking with respect to survival, nutritional outcome and QOL respectively[4]. From the patient and carer perspective, there are a number of challenges associated with gastrostomy and several factors which contribute to a delay in undergoing a gastrostomy[5, 6]. One of the conclusions from ProGas, a large longitudinal prospective cohort study which investigated optimum timing and method of gastrostomy for people with MND, was that whilst earlier gastrostomy might improve clinical benefit, | Many people with motor neurone disease (MND) have problems swallowing. This can make it harder to eat and drink and can lead to weight loss. One way of managing this is to have a feeding tube fitted into the stomach, known as a percutaneous endoscopic gastrostomy (PEG). Percutaneous means through the skin. Endoscopic refers to the long, thin, flexible tube used to position the PEG tube and gastrostomy is the operation which creates the opening into the stomach. Food, drink and medicines can be delivered directly into the body through the PEG tube.
Although this seems a good solution, there is very little evidence to back this assumption up. We do not know if tube feeding improves nutrition in people with MND, or whether it makes them live longer or even if it improves their quality of life. Some people have concerns about having a feeding tube fitted or what it’s like to live with one and may decide it is not the right choice for them.
The aim of this project it to develop a we | Dr Sally Wheelwright | University of Southampton | £189,153.39 | 12 d'octubre de 2018 | 12 de setembre de 2021 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | NA |
25 | 15/130/73 | ELECtric Tibial nerve stimulation to Reduce Incontinence in Care homes: ELECTRIC | Urinary incontinence is a distressing and embarrassing condition that occurs in around 70% older people who live in nursing or residential care homes. It is common in those who have dementia as well as those with other medical conditions. Urinary incontinence has a major impact on an older person’s dignity and quality of life and is linked to other health problems and relationship difficulties. It also affects a person’s ability and willingness to socialise. There are not many options for treatment of urinary incontinence in older people, especially those with dementia. There are several drugs available but these can have unpleasant side-effects. Sometimes pelvic floor muscle exercises, or going to the toilet at regular intervals are tried but these can be difficult to do by those who find it hard to get around or have memory problems. They are also hard to maintain in the longer term and so older people who experience bladder leakage usually rely on the use of absorbent pads to hold t | Design:A pragmatic, multicentre, placebo controlled randomised parallel group trial comparing transcutaneous posterior tibial nerve stimulation (TPTNS) with sham stimulation for effectiveness in reducing urinary incontinence (UI) in 500 care home (CH) residents. An internal pilot with 100-140 residents and nested process evaluation will investigate intervention fidelity and implementation support for sustainability. Setting: CH (nursing or residential) for older adults in England and Scotland. Target population: Men and women resident in CH, with urinary incontinence (UI) of weekly or more frequent occurrence, including those with cognitive impairment. Inclusion criteria: CH resident; self/staff reported UI at least once/week; use toilet/toilet aid for bladder emptying, with or without assistance; wears absorbent pads to contain UI. Exclusion criteria: indwelling urinary catheter; urinary tract infection (UTI); post-void residual urine (PVRU) more than 300ml; cardiac pacemaker; epileps | Professor Joanne Booth | Glasgow Caledonian University | £1,224,993 | 7 de gener de 2017 | 30 de juny de 2020 | Not mentioned | Not mentioned | Not mentioned | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | NA | NA |
26 | 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 | 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) | 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 treatment | Dr Emma Murphy | University of Southampton | £187,249 | 4 de gener de 2016 | 31 de març de 2019 | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | NA | NA |
27 | DCMC-RF-12-06 | A feasibility study of early identification, assessment and support for informal carers in primary care | This project addresses the need to identify and better support informal carers of people with cancer and other conditions who are approaching the end of life. It proposes and tests a novel primary-care based intervention, supported by Voices of Carers Across Lothian (VOCAL), that will overcome the barriers to the prospective identification of carers who either may not be aware that the person they care for is approaching death, or may not identify themselves as carers. Systematic carer identification, assessment and targeted support will empower carers as the cared-for person's illness advances, and will in turn enhance the quality of care that the patient receives. The objectives of this project are: 1) to develop and refine a preliminary model of carer identification, assessment, support and referral; and 2) To pilot and evaluate the intervention in four general practices. The project will be conducted in two stages reflecting the MRC new guidance on developing and evaluating complex | N/A | Professor Scott Murray | University of Edinburgh | £122,077.00 | 11 de gener de 2012 | 31 d'octubre de 2015 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | NA | NA |
28 | MCCC-FCO-16-U | Marie Curie Palliative Care Research Department, University College London | Core funding enables us to attract, retain and develop key staff, and has allowed the department to grow and maintain a broad range of qualitative and quantitative research skills, including systematic reviewing, health economics, statistics and qualitative methods. Core funding has enabled the department to undertake vital developmental, feasibility and pilot work leading to successful external funding applications. Core funding has also meant that we have been in a position to respond in a timely manner to changes in the research funding environment and to collaborate with colleagues (both within and beyond UCL) on joint research projects or funding applications. Core funding allows us to offer support and research expertise to other MC Hospices and research centres. This proposal outlines our plans for the core work of the department over the next five years. We set out here ten broad areas of proposed research activity. Our two statisticians (1 wte), health economist and systematic | The Marie Curie Palliative care research department at UCL receives core funding from Marie Curie. Additional income is generated by successfully bidding for research funds from other charities and from government sources (e.g. the National Institute for Health Research).
Our vision and our mission statements directly mirror those of Marie Curie. Our strategic plan sets out our plan to improve the quality, quantity and impact of our research.
We aim to help people and their families living with a terminal illness make the most of the time they have together by delivering and disseminating world class research that aims to enhance palliative and end of life care and support.
We aim to:
• Improve the ways in which our research is communicated to academic and professional colleagues, to patients and to the public. We will aim to improve the impact of our research (making sure our findings influence practice).
• Mentor and develop our existing staff and train the next generation of pa | Professor Paddy Stone | University College London | £1,884,232.00 | 4 de gener de 2016 | 31 de març de 2021 | Yes | Not mentioned | Not mentioned | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | NA | Homeless |
29 | MCCC-RP-12-A12565 | A study of quality of care needs for patients with idiopathic pulmonary fibrosis, and their carers, across disease trajectory | Idiopathic pulmonary fibrosis (IPF) is a progressive life-limiting condition characterised by chronic inflammation and progressive lung fibrosis. This results in worsening breathlessness, functional decline and eventual death, with a highly variable clinical course. There are approximately 4000 new cases of IPF diagnosed each year in the UK, an incidence which exceeds that of cervical cancer and of the acute leukaemias combined. Average survival is less than three years. Despite awareness that patients with IPF have specific palliative care needs, there is very little primary research to guide delivery. Differing disease trajectories also present specific barriers to intervention and challenges for coordination of care. There remains considerable uncertainty regarding the timing of palliative care interventions, the service configuration needed to support patients and carers and their information needs in negotiating optimal management. These key elements must be addressed in order to | N/A | Professor Anthony Byrne | Cardiff University | £110,761.47 | 6 de gener de 2012 | 30 de novembre de 2014 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | NA |
30 | MCCC-RP-14-A17159 | ACCESSCare: Advanced Cancer Care Equality Strategy for Sexual minorities | Lesbians have a higher lifetime risk of breast, cervical and ovarian cancer than heterosexual women, and gay men have a greater prevalence of cancer compared to heterosexual men. There is a greater risk of breast and prostate cancers for male-to-female transgendered people, and of ovarian, breast and cervical cancers for female-to-male. The UK's End of Life Care Strategy Equality Impact Assessment concluded sexual orientation and gender identity are perhaps the most likely areas for inequality and discrimination to occur in end-of-life care. Despite ongoing innovative work to enhance older LGBT care, little attention has been paid to those in the last year of life of all ages. Our recent systematic review of palliative and end-of-life needs, preferences and experiences of LGBT people identified 12 original studies, 1 from the UK. The data provided opportunities to improve communication, expectations, environments and practice, and highlighted evidence gaps to be addressed. Aims To deve | N/A | Professor Richard Harding | King's College London | £110,059.63 | 5 de gener de 2014 | 30 d'abril de 2016 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | NA |
31 | MCCC-RP-16-A20997 | The MENAC Trial: A randomised, open-label trial of a Multimodal Intervention (Multimodal = Exercise, Nutrition and Anti-inflammatory Medication) versus standard care in cancer patients with Cachexia | The MENAC trial is the first phase III clinical trial of a multimodal cachexia intervention in patients with advanced cancer (lung or pancreatic) undergoing palliative chemotherapy. Cancer cachexia is characterized by weight loss, muscle wasting, anorexia and fatigue. It is prevalent in pancreatic and lung cancer where mean survival is less than one year. There is no standard of care for cachexia. Through our increased understanding of cachexia pathophysiology (muscle wasting, reduced physical activity, negative energy/protein balance, systemic inflammation), there is now a sound argument that cachexia may be reversed through multimodal intervention (comprising oral nutritional supplements (ONS) and counselling, exercise programme omega-3 fatty-acids and ibuprofen) initiated at the start of chemotherapy may be beneficial. Our pilot study (preMENAC Study NCT01419145) has informed this proposal and shown the intervention (including basic exercise) is feasible. Building on these exciting | Cachexia is a wasting syndrome characterised by the loss of weight, muscle, appetite and physical function, accompanied by fatigue and weakness. It is not simply caused by a reduction in food intake, but has an underlying biochemical cause, linked to the biology of the cancer itself. It is common in patients with advanced lung and pancreatic cancer where mean survival is less than one year, and impacts through:
• Limiting the palliative treatment that can be given, as patients could be unfit to tolerate it and more likely to have side-effects; this could, in turn, impact on the amount of time they have with their families and loved ones
• Loss of independence, dignity and quality of life
• Anxiety and frustration around food and eating, for patients and caregivers
• Increasing costs linked to the need for care and support from family and healthcare providers.
Cachexia is responsible for 20-30% of cancer deaths but there is currently no standard of care for the condition.
Earlier te | Professor Marie Fallon | University of Edinburgh | £157,377.22 | 9 de gener de 2016 | 31 de desembre de 2020 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | NA |
32 | MCRGS-20171219-8011 | Understanding and improving community-based palliative care outside of normal working hours. | Background
Most people prefer care at home1. However provision of community specialist palliative care (SPC) outside of normal working hours (‘out-of-hours’) in the UK is highly variable2. Service components differ markedly 3 2, 4 5 and discontinuity of care is common6.
Without adequate ‘out-of-hours’ support, patients are at risk of being ‘crisis-managed’ with emergency department (ED) attendances and unplanned admissions7. Two-thirds of ED attendances are ‘out-of-hours’8, SPC patients commonly attend ED for; pain, breathlessness, vomiting, and weakness, with > 50% resulting in unplanned admissions9. Frequent ED visits indicates poor end-of-life care10, are associated with increased patient/family distress and dissatisfaction, and worse bereavement outcomes11. ‘Out-of-hours’ care is the top research priority from the James Lind Alliance, yet it has not been addressed12.
A literature review found that models of SPC are not defined13. We developed criteria to describe/compare models o | Community-based specialist palliative care services usually only run a full service between Monday & Friday, 9-5pm. This is only a quarter of the time; for the remaining three-quarters of their time, patients and their families/carers must rely on out-of-hours services. Care outside usual working hours is very variable depending on where someone lives. Some specialist palliative care teams have no out-of-hours; provision, so if patients or their families have urgent questions or an emergency, they must contact the on-call GP who can be hard to access and often does not know them, or attend an emergency department. This can result in a costly strain on accident and emergency departments and be very distressing for patients and their families/carers. When specialist palliative care services do have out-of-hours services, they are often delivered in different ways (e.g. by phone, or in person, sometimes by nurses, and sometimes by doctors). We do not know which combination of out-of-hours | Professor Richard Harding | King's College London | £267,432.34 | 2 de gener de 2019 | 31 de gener de 2022 | Not mentioned | Not mentioned | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | NA | NA |
33 | 10/71/01 | Does oral sodium bicarbonate therapy improve function and quality of life in older patients with chronic kidney disease and low-grade acidosis? A multicentre randomized placebo controlled trial | Many people with advanced kidney disease have high levels of acid in the blood. Acid in the blood is associated with tiredness, muscle weakness, worsening kidney function, problems with bone health (osteoporosis) and blood vessel health. Older people most commonly have problems with kidney disease, but are also most prone to problems with heart attacks, strokes and osteoporosis. Bicarbonate (used in baking powder) is often used to treat high acid levels, but it is not known whether this can improve tiredness, weakness, bone or blood vessel health. On the downside, bicarbonate can raise blood pressure and cause stomach discomfort and bloating. We will conduct a randomised controlled trial to test whether bicarbonate treatment makes older people with advanced kidney disease healthier. 380 patients will receive either bicarbonate or dummy (placebo) tablets three times a day for 2 years. We will test muscle strength and bulk, walking and balance ability, quality of life, kidney, bone and b | BiCARB is a multi-centre, double blind, placebo controlled, randomised trial evaluating the clinical and cost-effectiveness of oral sodium bicarbonate in the management of 380 older people with chronic kidney disease stages 4 and 5 who have a mild degree of metabolic acidosis. The trial will recruit patients from renal, medicine for the elderly and primary care services across a minimum of 6 UK centres. Male and female patients aged 65 and over with estimated glomerular filtration rate (GFR) of <30 ml/min, not on dialysis, and with serum bicarbonate levels <22 mmol/L will be eligible for participation. Participants will receive a total of 24 months of either bicarbonate or placebo, with outcomes measured at 0,3,6,12 and 24 months. In two of the centers (Dundee & Aberdeen) an optional additional sub-study measuring arterial stiffness and markers of bone health will be assessed in up to 150 of the patients at baseline, 12 and 24 months. Outcomes will include physical function, quality of | Dr Miles Witham | University of Dundee | £1,345,763 | 10 de gener de 2012 | 31 de març de 2020 | Yes | Not mentioned | Not mentioned | Not mentioned | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | NA | NA |
34 | 14/19/22 | Geographical understanding of variation in place of death: the role of care services and end of life care improvement (GUIDE_Care Services) | Around half a million people die in England each year, and this number is expected to increase 17% by 2030. If currents patterns of care continue, unchanged forecasts estimate we would need a 20% increase in hospital beds to maintain current levels of care. As treatments are developed to extend life, our population is ageing and increasingly people die following a chronic or progressive illness, requiring palliative care in the last months or weeks of life. The focus of care needs to shift from the ‘disease’, to the person with the illness and their family. Often people go into hospital, but for most, this is not their preference. Indeed many would prefer to be cared for at home for as long as possible and two-thirds of those who die would prefer to die at home. Consequently, the UK end of life care strategy set a target to enable people who die in their place of choice, usually home. However, although recent research has shown that for the first time in over 30 years, home deaths have | Background:The UK end of life care strategy has set a target to enable more people to die in their place of choice. Most people (85-90%) prefer to die at home or in a hospice. However, hospital remains the most common place of death (PoD), with great local variation in home and hospice deaths. In our NIHR project GUIDE_Care we have identified trends and patient factors associated with this variation. This explained a quarter of the variation and even less for cancer, dementia and some other Long Term Conditions (LTC’s) (~10%), prompting a further search for stronger determinants of where people die. This follow on study builds on the GUIDE_Care findings to investigate the potential role of service factors, provide national and local data to improve end of life care and better meet patient and family preferences. Aims and objectives: To evaluate the role of service factors in place of death, to inform national and local end of life care improvement. 1) To evaluate the relative contribut | Dr Wei Gao | King's College London | £302,878 | 7 de gener de 2015 | 31 de març de 2018 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | NA |
35 | DRF-2013-06-001 | Minimising and managing missing data in palliative care clinical trials. | drafted | 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. | Dr Jamilla Hussain | University of Hull | £281,040 | 1 de gener de 2014 | 30 de setembre de 2017 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | NA |
36 | DCMC-RF-11-01 | VOLUNTEER MANAGEMENT IN PALLIATIVE CARE, Meeting the specific challenges of involving volunteers in palliative care roles which require direct contact with patients or their families | 1. BACKGROUND In 2008 the government published the 10-year End of Life Care Strategy for England stating that “Hospices will continue to have a pivotal role within the new vision for end of life care set out in this strategy”.i This was confirmed in the recent ‘End of Life Care Strategy: Second Annual Report’ii, citing the ‘White Paper, Equity and Excellence: Liberating the NHS’iii: This means that demand on the services of hospices is likely to increase. However, this increase in demand will occur at a time of drastic changes in the funding environment and overall reductions in resources for hospices. One solution to this dilemma is to increase volunteer involvement in end of life care. Within a wider body of research on volunteering in hospices (for example, Doyleiv, Addington-Hallv and Whitewoodvi), the Institute for Volunteering Research (IVR) has conducted surveys with volunteers, volunteer managers and service managers in palliative carevii viii. These reveal that as of 2004 almo | Hospices and other palliative care services are facing a potential squeeze between increased demand for volunteer involvement due to changes in the funding environment and fewer people coming forward to volunteer due to wider economic and demographic changes. In response they will need to improve their
volunteer recruitment and retention as well as increasingly involve volunteers in roles involving direct contact with patients or their families. The proposed research will identify the challenges and existing good practice in these areas in ways that will guide the sector in ensuring that sufficient volunteers can be recruited and appropriately supported in these evolving roles. Currently we have very little knowledge about the impact of having increased numbers of volunteers carrying out roles in hospices and palliative care services that require direct contact with patients or their families. Experience from other sectors suggests that while volunteer involvement can have numerous pos | Mr Nick Ockenden | Institute for Volunteering Research | £137,910.00 | 7 de gener de 2011 | 30 de setembre de 2013 | Not mentioned | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | NA | NA |
37 | MCCC-FPO-18-U | Improving care, assessment, communication and training at the end-of-life (I-CAN-CARE) 2019-2021 | Improving care, assessment, communication and training at the end-of-life (I-CAN-CARE) 2019-2021 | N/A | Professor Paddy Stone | University College London | £804,272.88 | 4 de gener de 2019 | 31 de març de 2021 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | NA |
38 | MCCC-Leb-2 | Lebedev PhD studentship: Researching Young People with Cancer on the Internet: Development of Ethical Guidance and Suggestions for Research Regulation using the Views of RECs and Young People | Abstract: The ethics of research using the Internet and the particular challenges of doing so with children and young people remains under-developed. The first part of this study will involve reviewing the current literature and practice on research with children and young people using the Internet with a view to assessing how the Internet could be used as a platform for researching populations of children and young people with cancer or indeed how to provide care through online platforms for young people (13-25 years) with palliative care needs in a safe and secure fashion. A systematic review will explore the types of Internet-mediated research that has been conducted with young people with cancer (13-25 years), in addition to the ethical issues and the efficacy of using Internet-mediated research methods with this population. A document analysis will be conducted on decision letters from UK Research Ethics Committees to explore the types of ethical conflicts that can arise within th | N/A | Professor Myra Bluebond-Langner | University College London | £137,875.00 | 10 de gener de 2014 | 30 de juny de 2018 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | NA | Internet/online platforms |
39 | MCCC-RP-14-A17071 | Supporting family carers to enable patient discharge from acute care at end of life: qualitative study with carers and professionals to adapt evidence-based carer assessment to acute care settings | Discharge from hospital at end of life relies heavily on family carers' ability and willingness to help care for the patient. The purpose of the project is to investigate how support for carers at discharge may facilitate successful discharge for the patient. Aims To improve carer support to facilitate successful patient discharge by • investigating the content, timing and format of support required by carers at patient discharge • using findings to adapt an evidence-based carer support needs assessment tool to the acute care setting and integrate it into a pathway to facilitate timely and appropriate patient discharge Methods Qualitative study investigating carers' and professionals' perspectives on carer support needs at discharge and the utility and role of a Carer Support Needs Assessment Tool (CSNAT) in supporting carers, conducted within the catchment area of three NHS Trusts serving a diverse demographic population. Carer sample: A purposive sample of 30-36 bereaved and current | N/A | Professor Gunn Grande | University of Manchester | £90,247.40 | 8 de gener de 2014 | 28 de febrer de 2017 | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Yes | Not mentioned | Not mentioned | NA | NA |
40 | MCCC-RP-15-A18873 | End of life care for people with dementia: Using heuristics to improve practice in palliative care community teams | End of life care for people with dementia can be very difficult for many of reasons, not least because of their diminishing ability to communicate. Many practitioners lack the confidence to provide end of life care for people with dementia; this includes practitioners from palliative care backgrounds and practitioners experienced in dementia care. For these reasons end of life care for people with dementia is often poor. An existing gap in guidance for providing end of life care for people with dementia has been made even bigger by the removal of the Liverpool Care Pathway which provided practitioners with some guidance, which now needs to be filled. Aim: To develop a set of heuristics about end of life care for people with dementia living in their own home receiving end of life care, drawing on carers? experiences, to guide practitioners of different disciplines. Methods: Iterative technology development process using co-design methods to synthesise family carers? and palliative care | The withdrawal of the Liverpool Care Pathway (LCP) has left a gap in the guidance
for those caring for people at the end of life. Many people with dementia die in care
homes and their own homes, with a preference for their own home. Many would
benefit from a palliative approach. However, specialist palliative care is not always
available to people with dementia.
This project will develop and test a toolkit of „rules of thumb? (heuristics) for end of
life care (EOLC). The experiences of family carers of people with dementia will be
combined with those from specialist palliative care community teams in a process of
“co-design”. Co-design is a powerful way to make services more person-centred.
“Rules of thumb” (heuristics) are ways of condensing knowledge into useful plans of
action. For example, the FAST heuristic for stroke says if you have facial weakness
(F), arm weakness (A), or slurred speech (S) you should telephone 999 (T). We will
develop such heuristics for the management of pa | Dr Nathan Davies | University College London | £49,989.48 | 4 de gener de 2015 | 31 de gener de 2017 | Not mentioned | Not mentioned | Yes | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | NA | NA |
No hi ha cap resultat.