Understanding Fatigue in Paediatric Onset MS: Version 1
Research type
Research Study
Full title
Developing a Biopsychosocial Model of Fatigue in Children and Adolescents with Multiple Sclerosis: A Mixed Methods Study
IRAS ID
166485
Contact name
Susan Carroll
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
1 years, 10 months, 30 days
Research summary
Developing a Biopsychosocial Model of Fatigue in Paediatric Onset Multiple Sclerosis: A Mixed Methods Study
Although paediatric MS is rare, around 3-10% of people affected by MS (paMS) experience onset before age 18. Fatigue has been widely evidenced as the most common and one of the most disabling symptoms of MS. Although less widely researched, recent evidence of fatigue in children and adolescents with MS (caMS) reflects the findings of adult literature, with over half reporting at least mild fatigue and approximately 40% reporting fatigue that is severe enough to impact on school performance and recreational activities. As school performance and opportunities for social interaction are likely to impact on future choices, helping children to better manage fatigue may have important implications for their future. Fatigue in MS shows little association to clinical disease factors or disease modifying drugs. This suggests that other factors may contribute to the experience of MS fatigue.
So far, there is very little research on fatigue in caMS. This study therefore aims to develop an understanding of fatigue in caMS and its associated factors using mixed methods. In phase 1, in-depth qualitative interviews will be carried out with caMS and their primary caregivers to gain insight into the impact of fatigue and how children and caregivers respond to fatigue. Phase 2 will be a quantitative study comparing caMS with fatigue, caMS without fatigue, children with chronic fatigue syndrome and healthy controls on measures of fatigue, cognitive functioning and psychosocial factors. Findings will be used to develop a biopsychosocial model of fatigue in caMS, and a related self-management intervention in the future.
The study is funded by the MS Society and is organised by King’s College London in collaboration with Great Ormond Street Hospital. Participants will be recruited from participating NHS Paediatric Neurology Services and MS Charities.
REC name
London - West London & GTAC Research Ethics Committee
REC reference
15/LO/0091
Date of REC Opinion
16 Feb 2015
REC opinion
Further Information Favourable Opinion