Fatigue in paediatric Inflammatory Bowel Disease: burden, management and assessment
P-ECCO Committee Member
Fatigue is increasingly recognised as one of the most distressing and disabling symptoms in children and adolescents with Inflammatory Bowel Disease (IBD). Reported by 50%–86% of patients, it often persists even during remission and can outweigh abdominal pain in its impact on daily life [1-3]. Its origins are multifactorial: active inflammation, micronutrient deficiencies such as iron, vitamin B12 or folate deficiency, side effects of corticosteroids or anti-TNF therapy, poor sleep, psychological comorbidities including depression and anxiety, family dysfunction and reduced physical activity [1-3]. Despite its strong association with impaired quality of life, fatigue remains under-recognised by clinicians. Management requires a comprehensive, multidisciplinary approach that addresses both organic and psychosocial contributors [4-6].
Correction of iron deficiency, even without anaemia, has been shown to reduce fatigue, while escalation of anti-inflammatory therapy may help achieve deeper remission [5]. Sleep hygiene interventions are also promising: a randomised trial showed that sleep tracking and counseling, including limiting evening screen time, significantly improved fatigue scores. Psychological strategies, particularly cognitive behavioural therapy and solution-focused therapy, are recommended for patients with comorbid mood disorders, though paediatric evidence remains limited. Physical activity interventions may improve endurance and well-being, though adherence is challenging. Nutritional approaches such as thiamine supplementation are under investigation but remain adjunctive. Across studies, the consistent message is that no single therapy suffices; a multimodal, individualised plan is required. Routine screening for fatigue and its contributors, sleep disturbance, mood disorders and micronutrient deficiencies, should become part of paediatric IBD care. Fatigue is shifting from a neglected symptom to a treatment target, and addressing it comprehensively improves quality of life and empowers young patients in education, social activities and long-term disease management [7-8].
Validated tools exist to measure fatigue in children with IBD, though none are disease specific. The most widely used is the Paediatric Quality of Life Inventory Multidimensional Fatigue Scale (PedsQL-MFS), which assesses general, sleep/rest and cognitive fatigue domains and has demonstrated reliability and discriminative validity in paediatric IBD compared with healthy controls and other chronic conditions. The IMPACT-III questionnaire, a disease-specific quality of life instrument, includes two fatigue-related items used to approximate severity in research, but it is not a dedicated fatigue scale and lacks comprehensive validation. To date, no paediatric IBD-specific fatigue instrument has been developed [9-10]. By contrast, adult IBD-specific tools such as the IBD-Fatigue Scale and Modified Fatigue Impact Scale (MFIS-IBD) show strong psychometric properties but are not validated for paediatric use.
In summary, fatigue in paediatric IBD is common, burdensome and multifactorial. While the PedsQL-MFS remains the best available tool, the absence of a validated paediatric IBD-specific fatigue instrument represents a major gap. Development of such a scale, alongside interventional studies targeting modifiable risk factors, will be essential to improve outcomes and quality of life.
References
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- Kuzoian S, Jerson B, Brimacombe M, Schneeberg L, Hyams JS. Sleep tracking and sleep hygiene counseling improve fatigue in pediatric patients with inflammatory bowel disease. J Pediatr Gastroenterol Nutr 2025;81:62–8.