"Finding your feet": the development of a self-management treatment for fatigue in paediatric multiple sclerosis

Abstract

Background: Two-thirds of children and adolescents with multiple sclerosis (caMS) experience mentally and physically disabling fatigue. While effective treatments for paediatric MS fatigue are currently lacking, cognitive behavioural therapy (CBT) offers promising results in reducing fatigue severity and impact in adult MS and adolescent Chronic Fatigue Syndrome (CFS). We aimed to identify factors associated with fatigue in caMS and develop a tailored self-management treatment for caMS with fatigue. Methods: A systematic review was conducted to explore associations between fatigue and clinical and psychosocial factors in paediatric MS. Subsequently, a qualitative study was carried out to gain insight into experiences of fatigue in paediatric MS and understand how caMS and parents perceive and manage fatigue. Finally, a cross-sectional study was conducted to compare caMS, adolescents with CFS and healthy controls on measures of fatigue, cognitive functioning and psychosocial factors. Findings from these studies were collated and used to guide intervention development. Findings: The perpetuating and potentially modifiable fatigue-related factors identified in these studies included “all-or-nothing†behaviour, poor sleep-related behaviours, symptom catastrophizing, perceiving fatigue as uncontrollable, and difficulty disclosing fatigue. Thus, an eight-module CBT based self-management intervention was developed and included: (1) Understanding MS Fatigue (2) Goal Setting (3) Balancing Activities (4) Sleeping Soundly (5) Surviving School (6) Thoughts and Feelings about Fatigue (7) Disclosure (8) Information for Parents. Discussion: Self-management treatments have the potential to offer a cost-effective and accessible treatment option for caMS with fatigue. This intervention is currently being feasibility tested before being refined and implemented in clinical practice.