Title: Research partnership on functional loss and rehabilitation towards the end of life
Funder: Department of Health and Social Care

Abstract: WHY IS REHABILITATION IMPORTANT IN PALLIATIVE CARE?_x000D_ ‘Functional loss’ describes a person becoming unable to do the everyday activities they would like or need to do. These activities might include simple things like bathing and dressing, or more complex things like going shopping or managing bills. Life-limiting illnesses (like cancer, chronic lung disease, and dementia) and some symptoms (like pain, breathlessness, and fatigue) limit the everyday tasks people are able to do. As a result, functional loss is a common source of suffering for patients and their families._x000D_ _x000D_ Rehabilitation aims to support a person to carry out everyday activities that have been affected by illness. This should be an important part of providing good palliative care. However, in practice, not everyone has equal access to rehabilitation. Where resources are limited, these services have often been stopped or not provided. This is partly due to a lack of high-quality research about the best way to deliver this type of support._x000D_ _x000D_ _x000D_ WHAT IS THE AIM OF THE PARTNERSHIP?_x000D_ We aim to build a new research partnership focused on rehabilitation, to address functional loss in palliative and end of life care. Our proposed research partners are based in diverse areas (Edinburgh, East Anglia, Lancashire, Leeds, London and Nottingham), and include people with a range of research, clinical, and personal experience. By bringing together their complementary skills and sharing learning across the different research partners, we can improve the delivery of high-quality palliative rehabilitation research across the country._x000D_ _x000D_ _x000D_ WHAT WILL THE PARTNERSHIP DO?_x000D_ Together with professionals and public members, our research partnership will complete the following activities:_x000D_ _x000D_ 1. Mapping and building skills: _x000D_ Across our partnership we will find out what current services are available, and what knowledge and skills people have. We will then create opportunities for people to share and improve their knowledge and skills by offering structured training sessions, mentorship, skill-sharing opportunities, and protected time to develop new research ideas. This will allow teams with more research experience to support teams with less experience to develop their skills._x000D_ _x000D_ 2. Identifying important, unanswered research questions: _x000D_ We will work with professionals and members of the public to identify important unanswered research questions about functional loss and rehabilitation in palliative and end of life care. Using an online survey, we will then ask stakeholders to help rank which are the most important._x000D_ _x000D_ 3. Developing high-quality research ideas: _x000D_ We will lead three collaborative workshops to develop new research ideas to answer the most important questions identified activity 2. During the workshops, participants will be supported to work closely with expert researchers and public members to review and strengthen their suggestions._x000D_ _x000D_ _x000D_ WHAT IS THE ADDED VALUE OF THE PARTNERSHIP?_x000D_ Our partnership will ensure that diverse teams across the country are well-prepared to deliver high-quality research about functional loss and rehabilitation in palliative and end of life care. We will identify research priorities, and submit collaborative funding applications for studies to answer these questions. Overall, we hope that this work will improve care for patients and their families, and address inequalities in how rehabilitation is delivered during this important time.

Lay abstract: BACKGROUND_x000D_ Functional loss is defined as an inability to undertake necessary or desired tasks for everyday living. Life-limiting illness(es) and accompanying symptoms (e.g. pain, fatigue, breathlessness) commonly contribute to functional loss; a common source of suffering for patients and families._x000D_ _x000D_ Rehabilitation is a set of interventions designed to address functional loss. It is recognised as an important part of palliative care, as it can improve quality of life and cut ongoing care costs. However, not everyone has equal access to rehabilitation. In the face of limited life expectancy, or uncertain ability to benefit from interventions, palliative rehabilitation services are often absent. This can be addressed through high-quality research around optimal models of rehabilitation. Such research is methodologically challenging and requires multi-disciplinary and cross-speciality collaboration._x000D_ _x000D_ _x000D_ AIM & OBJECTIVES_x000D_ We aim to establish and grow a research partnership across diverse areas (starting with Edinburgh, East Anglia, Lancashire, Leeds, London and Nottingham) around the topic area of functional loss and rehabilitation in palliative and end of life care. _x000D_ _x000D_ Objectives are to:_x000D_ • Develop a sustainable multi-disciplinary, cross-speciality research partnership_x000D_ • Share topic and methodological expertise _x000D_ • Identify high-priority unanswered research questions with stakeholders _x000D_ • Co-design and submit high-quality competitive research proposals to NIHR_x000D_ • Build capacity and capability to deliver nationally generalisable studies _x000D_ _x000D_ _x000D_ PARTNERSHIP ACTIVITIES _x000D_ _x000D_ 1. Mapping and building skills: _x000D_ We will use interviews with staff and public members across partnership sites to map services attending to functional loss available to people approaching the end-of-life. We will also use the NIHR and Clinical Research Network portfolio to map research activity across these services. This work will be used to identify and engage new members in partnership activities, including offering structured training sessions, mentorship, skill-sharing opportunities, and protected time for proposal development. _x000D_ _x000D_ 2. Identifying important, unanswered research questions: _x000D_ We will lead a research question generation exercise, through a modified version of the Child Health and Nutrition Research Initiative (CHNRI) methodology. Together with partnership leads and wider professional and public stakeholders, we will identify and prioritise important unanswered research questions about functional loss and rehabilitation in palliative and end of life care. _x000D_ _x000D_ 3. Developing high-quality research proposals: _x000D_ Proposals addressing high-priority research questions will be developed, supported through three structured workshops and input from a Complex Clinical Trials unit. The workshops will focus on shaping the proposal, strengthening the methodology, and refining the proposals, and will provide space for constructive discussion and feedback from expert researchers and public members. _x000D_ _x000D_ _x000D_ TIMELINES FOR DELIVERY_x000D_ 12 months._x000D_ _x000D_ ANTICIPATED IMPACT_x000D_ Our partnership will establish top high-priority research questions, submit collaborative proposals to the NIHR to answer them, and ensure that diverse teams across the country are well-prepared to deliver high-quality research about functional loss and rehabilitation in palliative and end of life care. Such work will address inequalities and improve how rehabilitation is delivered during this important time.

Research activity codes: 7.4 RESOURCES AND INFRASTRUCTURE (DISEASE MANAGEMENT);8.5 RESOURCES AND INFRASTRUCTURE (HEALTH SERVICES)
Health categories: GENERIC HEALTH RELEVANCE