PINPOINT-Impact: Understanding fatigue in paediatric IBD
Research type
Research Study
Full title
PINPOINT-Impact: A deeper understanding of fatigue in Paediatric IBD
IRAS ID
356801
Contact name
Paul Henderson
Contact email
Sponsor organisation
University of Edinburgh
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 2 months, 27 days
Research summary
Fatigue, defined as exhaustion or a lack of energy, affects up to half of patients with inflammatory bowel disease (IBD). While bowel inflammation may contribute, many patients without active inflammation also experience severe fatigue. Research in paediatric IBD (PIBD) and fatigue is especially limited, and previous studies focusing on blood tests, inflammation, medications, or quality of life have shown inconsistent results. It is now clear that simply “treating inflammation” is not enough. Fatigue is complex, can cause significant impairment, and in some cases reaches the level of disability. Larger, longitudinal studies are urgently needed, alongside hearing directly from patients and families about their experiences.
This project will study children and young people with and without IBD to better understand the full spectrum of fatigue, from mild tiredness to debilitating exhaustion. Using questionnaires, we will assess links between fatigue, mental and physical health, sleep, social functioning, and disability. Importantly, patients and their carers will share their views on the causes of fatigue, how they currently manage it (such as lifestyle changes or medicines), and what additional support might help. These insights will not only guide strategies to reduce fatigue but also support parallel biological studies, including investigations of mitochondrial function in collaboration with the MUSIC/mini-MUSIC studies.
The study’s specific aims are to: (a) evaluate how health and social functioning contribute to fatigue and disability in PIBD; (b) capture the full range of fatigue and its changes over time; (c) assess its impact on school, social life, and emotional well-being; (d) examine family and carer perspectives; (e) explore prevalence and disability associated with fatigue; (f) compare fatigue in young people with and without IBD; (g) identify coping and treatment strategies from patient and carer experiences; and (h) create a patient/parent program for shared learning and expert input.
REC name
Wales REC 5
REC reference
26/WA/0079
Date of REC Opinion
17 Mar 2026
REC opinion
Favourable Opinion