Inclusion criteria, exclusion criteria and study summary
Multiple Sclerosis (MS) is a chronic and progressive autoimmune condition which affects the central nervous system. Currently, there are more than 130,000 people living with MS (pwMS) in the United Kingdom.. Fatigue is one of the most common and disabling symptoms in MS. Pharmacological interventions are no longer framed as the first-line treatment, as there is limited evidence on their benefits, coupled with detrimental side effects. Thus, updated NICE recommendations emphasise personalised management using non-pharmacological approaches (e.g., behavioural therapy and exercise). The REFUEL-MS programme of research is a National Institute of Health Research (NIHR) Programme Grant for Applied Research (PGfAR) and MS Society co-funded programme. The overall aim of the programme grant is to develop a new evidence-based digital intervention for fatigue in MS which combines exercise and cognitive behavioural therapy (CBT) techniques – drawing on existing interventions and research in MS. In WP1&2, we plan to work with NHS-based MS centres to recruit pwMS, particularly those from under-served/seldom-heard groups, formal and informal carers and healthcare professionals working in MS fatigue management. Participants will be invited to join a one off focus groups or interviews to qualitatively explore the experiences of fatigue, fatigue treatment needs and the perceived barriers and facilitators for a fatigue management intervention in the NHS. These will take place largely online but with flexibility for in person where possible. We also want to observe how MS fatigue is currently managed during routine care. All participants will need to be 18 or over, living in England and either a pwMS who experiences fatigue, a healthcare professional working in MS fatigue management or providing care, either formally or informally, to a pwMS. Unfortunately those currently experiencing a severe mental health problem or are unable to give informed consent will be excluded. The study will run until June 2024.