Health-related quality of life instruments in pediatric disorders of gut-brain interaction: a COSMIN-based systematic review.
Source: PubMed, NCBI / U.S. National Library of Medicine
Functional gastrointestinal disorders, now referred to as disorders of gut-brain interaction (DGBI), impose substantial functional and psychosocial burdens on affected children and their families. Health-related quality of life (HRQoL) has become an important patient-reported outcome in this field. This review aimed to systematically evaluate the measurement properties of instruments used to assess HRQoL in pediatric DGBI. A systematic review was conducted following the COSMIN methodology. PubMed, Embase, and Web of Science were searched from database inception to Oct 23, 2025. Studies evaluating the measurement properties of patient-reported outcome measures assessing HRQoL in children aged 0-18 years with disorders of gut-brain interaction were included. 14 studies evaluating nine health-related quality of life instruments were included. These comprised four generic instruments (PedsQL 4.0, EQ-5D-Y, CHU-9D, and the PedsQL Family Impact Module) and five disease-specific instruments (PedsQL Gastrointestinal Symptoms Scales, PedsQL Gastrointestinal Worry Scales, Infant Colic Questionnaire, PedFCQuest-PR, and the Defecation Disorder List). The instruments were evaluated across six pediatric DGBI subtypes: cyclic vomiting syndrome, infant colic, functional dyspepsia, irritable bowel syndrome, functional abdominal pain-not otherwise specified, and functional defecation disorders. Among generic instruments, PedsQL 4.0 has the most comprehensive supporting evidence and can b
Abstract
Functional gastrointestinal disorders, now referred to as disorders of gut-brain interaction (DGBI), impose substantial functional and psychosocial burdens on affected children and their families. Health-related quality of life (HRQoL) has become an important patient-reported outcome in this field. This review aimed to systematically evaluate the measurement properties of instruments used to assess HRQoL in pediatric DGBI. A systematic review was conducted following the COSMIN methodology. PubMed, Embase, and Web of Science were searched from database inception to Oct 23, 2025. Studies evaluating the measurement properties of patient-reported outcome measures assessing HRQoL in children aged 0-18 years with disorders of gut-brain interaction were included. 14 studies evaluating nine health-related quality of life instruments were included. These comprised four generic instruments (PedsQL 4.0, EQ-5D-Y, CHU-9D, and the PedsQL Family Impact Module) and five disease-specific instruments (PedsQL Gastrointestinal Symptoms Scales, PedsQL Gastrointestinal Worry Scales, Infant Colic Questionnaire, PedFCQuest-PR, and the Defecation Disorder List). The instruments were evaluated across six pediatric DGBI subtypes: cyclic vomiting syndrome, infant colic, functional dyspepsia, irritable bowel syndrome, functional abdominal pain-not otherwise specified, and functional defecation disorders. Among generic instruments, PedsQL 4.0 has the most comprehensive supporting evidence and can be used when a broad assessment of health status is required. Disease-specific instruments, particularly the PedsQL Gastrointestinal Symptoms Scales and the PedsQL Gastrointestinal Worry Scales, align more closely with gastrointestinal-related impacts and may be better suited for evaluating DGBI-related outcomes. Evidence for several measurement properties remains incomplete, especially for structural validity and responsiveness. More systematic evaluation of these instruments will help improve outcome measurement and strengthen the interpretation of treatment effects in pediatric DGBI.