A dying person with dementia in a care home should not be in pain or distress, yet current care often fails them. This five-year programme from the Marie Curie Palliative Care Research Department tackles ten specific gaps in end-of-life care, from managing agitation in dementia to supporting homeless people dying on the streets. The researchers will test whether a drug called methylphenidate can relieve fatigue in advanced cancer, and whether subcutaneous levetiracetam can prevent seizures in the final days of life. They will also develop a best-practice model for palliative care in advanced liver disease, a condition that kills thousands each year but receives little end-of-life research attention. If successful, these studies could change how hospices, hospitals, and care homes deliver care for the most neglected groups—people with dementia, homeless individuals, and children with life-limiting conditions. The work is applied and practical: better symptom management, clearer care pathways, and stronger evidence for treatments that clinicians currently prescribe without solid data.
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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 reviewer provide cross-cutting support and methodological expertise across all areas of research activity. Our research priorities have been informed by the results of the James Lind Alliance palliative and end-of-life care Priority Setting Partnership research. 1. Dementia – Implementation of the previously funded Compassion programme for care of patients with dementia in care homes and development of work around anticipatory grief. We will also undertake research into pain and agitation in dementia in people dying in acute hospitals and care homes and developing care pathways and complex interventions to improve care for frail older people nearing the end-of-life. 2. Homeless people – We plan a mixture of focus groups and semi-structured interviews with homeless people and health professionals to understand the experiences and needs of homeless people, to identify barriers in providing good end-of-life care and to explore how care systems and coordination can be improved. 3. Advanced liver disease – We will work to develop and evaluate a best-practice model for providing palliative care to people with end-stage liver disease. We will also develop a Quality Innovation Productivity and Prevention (QIPP) work stream around palliative care in advanced liver disease. 4. Cancer – We will seek funding to undertake: a large multi-centre study to validate the prognosis in palliative care predictor models; to evaluate subcutaneous levetiracetam in patients at risk of having fits in the terminal phase; to evaluate methylphenidate for fatigue in patients with advanced cancer 5. Children and Young People – We will develop the BRAVES (Barriers to Research Access: Voices, Experiences and Solutions) study to improve research access and will support studies in collaboration with the Institute of Child Health 6. Psychological Interventions – We will complete two on-going studies of psychological interventions in cancer patients (CanAct and CanTalk) and apply for a programme grant for SureCan. 7. Spirituality – We will apply for funding to undertake validation work on the European Organisation for Research and Treatment of Cancer (EORTC) Spiritual Well-Being module and develop a research proposal on the role of NHS hospital chaplaincy services 8. Systematic reviews – We will continue to undertake and update systematic reviews and undertake methodological work in synthesis of complex data. 9. Health economics – We will continue to undertake health economic analyses as part of on-going projects (Compassion, Liver disease, Can Talk) and work with colleagues at other centres to provide health economic expertise. 10. PhD students – We will ensure that current PhD students complete their dissertations on schedule (areas of study are complementary to our programme and include managing uncertainty in primary brain tumours, prognostication and the use of analgesia in people with dementia) and we will develop research capacity by providing more PhD opportunities for aspiring researchers.
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