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Developing a fatigue treatment for multiple sclerosis (MS): exploring the views of people living with MS, people providing care or assistance to those living with MS, and healthcare professionals

Study ID: 57560
Short Title: REFUEL-MS: Qualitative research for WP1 and WP2
Organisation: University Hospitals Dorset NHS Foundation Trust
Location: Poole Hospital
Condition: Multiple sclerosis
Main Specialty: Neurological disorders
Expected End Date: 01/06/2024
Postcode: BH15 2JB
Contact Name: R&D department
Contact Email: University Hospitals Dorset NHS Foundation Trust
Active: Yes

All participants across the sub-studies will be eligible if they are: 1) 18 years of age or over 2) A resident in England 3) Willing to give informed consent and participate in the study Additional inclusion criteria will also be applied depending on the participant group. People living with MS will be eligible if they: 1) Have a confirmed diagnosis of MS by a neurologist, according to the McDonald revised criteria assessed using self-report. 2) Experience clinical levels of fatigue, scoring > = 4 on the Chalder Fatigue Questionnaire (CFQ), when using bimodal scoring. People living with MS from under-served/seldom-heard groups will be further eligible if they meet the above criteria and 1) Self-identify as a member of an under-served / seldom-heard group The definition of an under-served/seldom-heard group is taken from the NIHR (2020) Include Project, however, flexibility will be used when assessing this to avoid unintentionally excluding anyone who is a member of an under-served/seldom-heard group in MS. Formal carers will be eligible if they are: 1) In a paid carer role 2) Provide care to people living with MS 3) Fatigue is a symptom of their care recipient(s) living with MS Informal carers will be eligible if they: 1) Currently provide assistance/support for someone living with MS 2) Fatigue is a symptom of the person living with MS they care for Healthcare professionals will be eligible if they: Work as a healthcare professional with people living with MS OR a service manager in a service that provides care to people living with MS. All participants, both clinicians and patients, in the observational studies must be adults, aged 18 years or over, residents in England, and be willing to give informed consent to be observed during a clinician-patient interaction. Clinicians must be working as a healthcare professional with people living with MS who experience fatigue in an NHS service. Patients must be a person living with MS who experiences MS-related fatigue and accesses MS fatigue care through an NHS service. Any participants, both clinicians and patients, will be excluded from the sample if they are unable to give informed consent (for example, due to reduced mental capacity).

People living with MS will be excluded if they are: 1. Suffering from a severe mental health problem, including psychosis, bipolar disorder, or active thoughts of self- harm assessed by self-report 2. Unable to provide fully informed consent (for example, due to reduced mental capacity) There are no exclusion criteria for formal carers, informal carers, HCPs and service managers, except an inability to provide informed consent (for example, due to reduced mental capacity).

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.

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