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Developing a biopsychosocial model and self-management treatment for fatigue in paediatric multiple sclerosis

Student thesis: Doctoral ThesisDoctor of Philosophy

Fatigue is one of the most common and disabling symptoms of multiple sclerosis (MS), affecting up to 76% of children and adolescents with MS (caMS). Whilst Cognitive Behavioural Therapy (CBT) has been effective in reducing fatigue severity and impact in adult MS and adolescent Chronic Fatigue Syndrome (CFS), fatigue in paediatric MS remains poorly understood and effective treatments are lacking. Using mixed-methods, this thesis aimed to develop a biopsychosocial model of fatigue in paediatric MS and a related self-management treatment for caMS with fatigue.
A systematic review of fatigue in caMS found that fatigue is unrelated to clinical factors measured to date, but is correlated with psychosocial factors including depressed mood, impaired school performance and lower quality of life. The review highlighted the need for research in this area to identify potentially modifiable factors associated with fatigue. A qualitative study using thematic analysis with caMS (n = 15) and their parents (n = 13) offered insights into perceptions of fatigue as an uncontrollable and uncertain symptom, difficulty balancing activity and rest, parents’ concern about their children’s fatigue, and the role of social support and disclosure in caMS’ management of fatigue. A cross-sectional study (n = 175) compared 30 caMS (15 fatigued; 15 non-fatigued), 30 adolescents with CFS, 30 healthy controls and their respective parents on measures of fatigue, neurocognitive functioning and psychosocial factors previously associated with fatigue in other conditions. Fatigued caMS and adolescents with CFS reported equivalent fatigue severity, functional impairment, daytime napping and cognitive behavioural responses to symptoms scores, which were significantly higher than those of non-fatigued caMS and healthy controls. There were no between group differences on sleep behaviours (except daytime napping) or psychological difficulties, and neurocognitive impairment was evident in caMS regardless of fatigue. Parents of all illness groups reported significantly higher unhelpful cognitive behavioural responses to fatigue than parents of healthy controls, and distress was higher in parents of the fatigued than non-fatigued groups. 
Findings from all studies informed the development of a paediatric MS-specific cognitive behavioural model of fatigue. Following the Intervention Mapping framework and person-based approach to enhancing intervention acceptability, this model informed the development of an eight-week guided CBT based self-management treatment for caMS with fatigue and their parents, which was refined with patient and parent involvement. The intervention was tested in a feasibility study, where low uptake indicated that it is not feasible in its current form. Overall, this thesis contributed to a more comprehensive understanding of fatigue in caMS than that achieved in the literature to date. It offered potential avenues for intervention, which require further adaptation and evaluation before implementation is possible in clinical practice.
Original languageEnglish
Awarding Institution
Award date1 Mar 2018

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