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Measurement Properties of Caregiver Impact Measures in Pediatric Chronic Gastrointestinal Disorders: A Systematic
Daniela Gattini1, Camille Maltais-Bilodeau2, Cornelia M Borkhoff1
1Hospital for Sick Children, University of Toronto.
Purpose:
Caregivers of children with chronic gastrointestinal disorders experience physical, psychological, social, and financial impact. This systematic review aimed to evaluate the available evidence on the measurement properties of caregiver impact PROMs in chronic gastrointestinal disorders and to identify the best available measures.
Methods:
MEDLINE, Embase, CINAHL, PsycINFO, and Scopus were comprehensively searched from their inception to April 30, 2026. All English language studies examining the measurement properties of caregiver impact measures in children with chronic gastrointestinal diseases were included, irrespective of measure language. All COSMIN measurement properties were examined. Risk of bias was assessed to derive recommendations for suitable PROMs to measure caregiver impact.
Results:
A total of 24 studies of 26 tools were included. Study quality was moderate or low. Measures with sufficient evidence of validity included: Arabic Celiac Disease Parent Caregiver Quality of Life (CDPCA-QoL); Celiac Disease Life Inventory of Family Experiences (CDLIFE); CDPCA-QoL; Cincinnati Fecal Incontinence Scale (CINCY-FIS); Croatian Pediatric Quality of Life Inventory™ Family Impact Module (PedsQL™ FIM); Feeding/Swallowing Impact Survey (FS-IS); Portuguese FS-IS; Parental Opinions of Pediatric Constipation (POOPC); Work Productivity and Activity Impairment (WPAI)-Crohn's Disease-caregiver; and WPAI-Ulcerative Colitis-caregiver. The review identified 16 additional PROMs assessing caregiver impact; however, further research is required to determine the adequacy of their measurement properties.
Conclusion:
Despite the number of caregiver impact PROMs identified, high-level evidence supporting their measurement properties in chronic gastrointestinal disorders remains limited. Ongoing measurement evaluation and rigorous cultural validation are essential to strengthen the evidence base and support their broader clinical application.
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