Development and validation of the Early Pediatric Groningen Defecation and Fecal Continence questionnaire

There are no compatible tools that assess bowel function in young children, older children, and adults. This precludes clinical follow-up and longitudinal scientific research. Our aim was therefore to develop and validate a bowel function questionnaire equivalent to the pediatric (8–17 years) and adult (≥ 18 years) Groningen Defecation and Fecal Continence (DeFeC) questionnaires for children from the age of 1 month to 7 years. We developed, validated, and translated the Early Pediatric Groningen DeFeC (EP-DeFeC) questionnaire according to the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN). The EP-DeFeC incorporates different validated bowel function scoring systems, including the Rome IV criteria that are also included in the pediatric and adult DeFeC. We assessed feasibility and reproducibility by a test–retest survey. The study population (N = 100) consisted of the parents/caregivers of children whose median age was 4.0 (IQR 2.0–5.0) years. The mean interval between testing and retesting was 2.7 ± 1.1 months. None of the respondents commented on ambiguities regarding the questions. The overall median time taken to complete the EP-DeFeC was 8.7 min (IQR 6.8–11.8). The overall observed agreement was 78.9% with an overall kappa coefficient of 0.51, indicating moderate agreement. Conclusion: The EP-DeFeC is a feasible, reproducible, and validated questionnaire for assessing bowel function in children from the age of 1 month to 7 years. If used in combination with its pediatric (8–17 years) and adult (≥ 18 years) equivalents, this questionnaire enables longitudinal follow-up of bowel function from infancy to adulthood. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00431-022-04714-2.