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Research strategy

Palliative care and rehabilitation medicine are in the earlier stages of academic development. Methods and measures need refinement, care services are often considered ‘Cinderellas’, and NHS and research funding are limited.

Analysis of the UK research expenditure (charity and statutory) shows that less than 0.25% of the research budget in cancer is allocated to palliative or end of life care (Lancet 2012; 379(9815):519). Similar levels of underinvestment extend across disease groups and to rehabilitation. Worldwide 107 people die every minute; in the UK 69%-82% of the half million dying each year need palliative care (Palliat Med. 2013 May 21).

Further, the UK faces a 17% rise in annual deaths to 2030. These people will be frail and elderly (Palliat Med. 2008 Jan; 22(1):33-41).

Patterns of dying will change as chronic and progressive diseases predominate and coexist, and the boundaries between being ill and dying will be obscured and prolonged. Our unique unification of palliative care and rehabilitation anticipates this as societies will have to engage with the individual need to ‘live well until you die’ realised through symptom management, rehabilitation and/or palliation.

The caregivers/family need support as they care; societies’ are obliged to manage competing costs, duties and demands. This can only happen if the changing demography of living and dying is understood, and ways to improve its quality are discovered and researched. Precious and limited human and material resources can then be used wisely and less wastefully.

People suffer in and die from a life, not just a disease. Our research strategy is to lead the world in ethical and robust research that responds to people, families and communities affected by progressive, far advanced and life limiting conditions. We focus on understanding the needs of the most neglected and disadvantaged groups in our society, discovering and testing solutions.

Patients and families are complex systems with complex outcomes in need of complex solutions that cross boundaries between health and social care, statutory and voluntary provision. Consequently our research teams are multiprofessional and have to think outside their boxes. We aim also to translate our research quickly into care, practice and policy: our priorities are to promote dignity and relieve suffering.

Because research in palliative care and rehabilitation is young, compared to other disciplines, our senior expertise is limited. Alongside the moral priorities is a practical one: to build research capacity by training staff and developing new methods and better skills.

For example, patients in need of palliative care, or those with brain injury (Turner-Stokes research), and their families, are considered hard to reach, by virtue of their profound disability, symptoms, distress, closeness to death or work of caregiving. Identifying patients, recruiting them, and the practical challenges in interviewing and retention in studies requires great effort. What is a good outcome from a new intervention or model of care, and how we can know and measure that, like our patients, is not simple. This is why we see our methodological strand to be such an important foundation for our and others’ research.

Our research has four main strands. All are inter-related, multiprofessional, and share learning and methods:

  1. Evaluating and improving care: these are studies to develop, test and evaluate existing and new models of care: an example, is innovating and evaluating, by randomised trial, a new model of short term palliative care for patients with multiple sclerosis. We are testing a new intervention in Intensive Care Units – developing PACE – a psychosocial assessment and communication evaluation – to ensure staff give the best support for patients and families at times of uncertainty. The work is now at multicentre phase III trial stage and modification and evaluation for older people (new NIHR grant awarded to Evans); new work is also evaluating in two randomised trials new palliative care services for people with HIV/AIDS in Africa (Diana Fund). The theme of research on evaluating and improving care is very important for the future. We believe it is important not only to describe need, but to find ways to better meet it. We plan to expand this theme. Many of the developments in this theme grow from work in other themes, where we have identified unmet problems, and innovate and evaluate improved services and interventions and use the outcome measures and the methods developed in other strands.

  2. Focused clinical research on symptoms: our studies include Cochrane reviews, observation studies and trials to test interventions and treatments. Examples include: non-pharmacological interventions for breathlessness, opioid analgesia in cancer, treating spasticity, antidepressant use. New research is now combining effective treatments and testing these in clinical trials, for example a trial of neuromuscular electrical stimulation, a new Breathlessness Support Service (two new NIHR grants) and new research to understand neglected symptoms, such as episodic breathlessness.

  3. Person centred outcome and assessment measures: the litmus of good care is the outcome for a patient and family. Developing and using short reporting measures for patients, families and observer/staff that capture complex circumstances in complex patients, are fundamental tools for research and clinical practice. These cover pain and symptoms, psychological and spiritual need, social, service and rehabilitation concerns and circumstances. Future work is taking forward these tools to aid the assessment of complexity, and care commissioning, particularly important given the poor or patchy funding of palliative care and rehabilitation (NIHR programme grants of Turner-Stokes and a new award for Murtagh).

  4. Living and dying in society: the suffering and dying, by the very nature of what is happening are vulnerable and society continuing to cater for their needs is not guaranteed. To future proof palliative care and rehabilitation, the public needs better understanding through better communication. Our mixed methods research on tomorrow’s populations addresses this. Challenges include the very elderly, informal caregivers, evolving preferences, diverse cultural groups and those in care homes. Much of this work is underpinning new health care policy. For example, we have highlighted the need to consider people’s preferences for place of care, in particular home. We have shown the factors that enable home death, and now are embarking on new studies to investigate how to improve the quality of home care, with new programmes in London, and in a programme across Portugal. To learn from different health systems, our research is reaching out and comparing care in advanced disease for older people across London, Dublin and New York. 

Across all these strands our systematic and Cochrane reviews collate the best evidence to improve practice here and now. We then build from these to develop research, test interventions, and then incorporate our results with existing evidence.

We conduct methodological development to improve rigour, ethical standards and ways to understand and support the most profoundly ill populations better, with research to produce guidance and best practice. Our MRC-funded programme refined the MRC framework to develop and test complex interventions and produce guidance of best evidence of research practice in palliative care, including novel ways to classify attrition, the complexity of person-centred care is reflected in our multidisciplinary clinical academic team. Our concept-to-care programme of interventions supports the King's “Pathway to Impact on Health”.

We focus on disseminating all our work widely and working collaboratively with many groups, patients, families and service users, clinicians, health and social care services, policy makers and others. We have a strong focus of implementation and dissemination, reflected in our BUILDCare international programme that is enhancing public engagement, empowerment and access to appropriate and effective palliative care and rehabilitation.

Our strategic approach to person-centred care is enabled by our international programme on outcome measurement, supported by our actual and virtual research environments supporting a global community of Palliative care Outcome Scale (POS) users.

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