Title: Personalised Exercise-Rehabilitation FOR people with Multiple long-term conditions (multimorbidity)-The PERFORM trial
Funder: Department of Health and Social Care

Abstract: Research question Is a personalised exercise rehabilitation for people with multiple long-term conditions (PERFORM) more clinically effective and cost-effective than usual care? Background Rehabilitation, the action of restoring someone to health or normal life illness remains a core component of health service provision. A substantive body of evidence has demonstrated improvements in functional capacity and health-related quality of life and reduction in hospital admissions following exercise-based rehabilitation for single index diseases, notably, chronic obstructive pulmonary disease, post-myocardial infarction/ revascularisation, heart failure (i.e. pulmonary and cardiac rehabilitation (CR/PR). However, it is increasingly recognised that such rehabilitation programmes do not meet the needs the increasing number of people presenting with long-term conditions or NHS where they are managed. Continuing to develop single indication rehabilitation programmes despite accumulating evidence for diverse disease groups is unlikely to be attractive or efficient for health services or for patients. The recent NHS Long Term Plan highlighted the urgent need for innovative approaches to address the needs of people with multimorbidity. Aims and objectives To co-develop (with patients, caregivers, clinicians, and service commissioners) a bespoke programme of personalised exercise-based rehabilitation for people with multimorbidity and to evaluate its acceptability, clinical effectiveness, and cost-effectiveness of its implementation into the NHS. Methods The project will comprise 5 work packages (WPs). WP1 (identification of outcome clusters): seeks to identify clusters of LTCs with greatest need with clear evidence of effectiveness in at least one of the candidate diseases and highest healthcare costs applying data science approaches to routine data (WP1a); systematic review (WP1b); and health economic approaches (WP1c); WP2 (Intervention development): work with stakeholders to integrate, adapt and transform existing CR and PR programmes into a novel integrated rehabilitation programme (PERFORM) to treat a wide range of people with multiple LTC and develop a training package to support workforce development and training to deliver the PERFORM intervention. WP 3 Feasibility trial to inform the planning of a full-scale trial evaluating PERFORM and further develop the intervention and programme theory. WP4 Full randomised controlled trial LTCs to assess the clinical and cost-effectiveness of PERFORM compared to routine care and traditional cardiac and pulmonary rehabilitation programmes . WP5 (study within a trial) will evaluate the use of social media to support trial processes. Timelines for delivery The project will be conducted over 63 months. WP1 and 2 will be conducted in parallel. WP3 will recruit over an 8-month period. WP4 is the main trial and will work with 12 sites across the UK with a 12 month follow up period. WP5 is a study within a trial embedded in WP4. Anticipated impact and dissemination We anticipate the PERFORM intervention will provide step change in the delivery of rehabilitation for individuals with multiple LTCs. This novel intervention will be supported by a work force training package to support service transformation. Dissemination and will be supported by our stakeholder group and patient advisory group. We will seek to identify barriers and facilitators to future wide scale implementation and develop an implementation toolkit.

Lay abstract: WHY THIS RESEARCH IS IMPORTANT Some six million people aged 60 and over in England live with multiple long-term conditions, e.g. individuals may have heart disease alongside kidney and lung disease. Healthcare systems traditionally provide care focusing on one disease at a time. Rehabilitation services are a good example: providing services separately for people with heart and lung disease, not together. The central aim of rehabilitation is to reduce the burden of disease by reducing the impact of symptoms and supporting self-management. Our aim is to develop and test a rehabilitation programme for people with multiple long-term conditions to help improve their overall well-being and health-related quality of life - the PERFORM (Personalised Exercise-based Rehabilitation FOR people with Multiple long-term conditions) project. OUR PLAN The project has five research work packages, we propose to: 1. Identify groups of people with long-term conditions who would most benefit from exercise-based rehabilitation 2. Develop the PERFORM study by reviewing current information and organising workshops for such people, their caregivers, and clinical healthcare staff (care providers and service managers) in order to prioritise key issues such as medications, exercise, anxiety/stress, with a view to understanding what supports or blocks helpful behaviours. 3. A training programme will be developed to support staff to adapt from existing rehabilitation programmes to deliver the PERFORM intervention, which we believe will deliver a package of individually prescribed, supervised exercise and education over 8-12 weeks, supported by trained staff. 4. Undertake a test run at three NHS sites to check if the PERFORM intervention and the full study design is acceptable and practical for patients and staff. 5. Undertake a full-scale study at 12 NHS sites; allocating individuals with multiple LTC s to receive either PERFORM plus usual care or just usual care to assess clinical effectiveness and value for money. 6. Conduct a sub-study to explore the value of social media (such as Facebook/WhatsApp/Twitter/Instagram, etc.) to help retain participation in the main study. INVOLVEMENT OF PATIENTS, CARERS AND STAKEHOLDERS Patients and carers with lived experience of multiple long-term conditions have extensively been involved in the design and development of our PERFORM project. Our patient and public advisory group informed us that rehabilitation should be about quality of life, understanding people s day- to- day experience of living with the diseases, and their need for holistic care. The above was critical in our decision to use a health-related quality-of-life questionnaire as the primary measure for the success of PERFORM. A standing group of patients and carers, and a group of stakeholders will maintain ongoing advice throughout the project. We will also use our relationships with patient organisations, stakeholders, collaborators, and the research community to share our findings.

Research activity codes: 6.7 PHYSICAL;5.7 PHYSICAL
Health categories: GENERIC HEALTH RELEVANCE;CARDIOVASCULAR