Development of the “JPCC Barriers to Pediatric Colostomy Care Scoring System”: A Modified Delphi Study

Background: In low- and middle-income countries (LMICs), pediatric colostomy care is associated with significant clinical, social, and economic challenges that negatively impact patient outcomes. This study aimed to identify key barriers to pediatric colostomy care and to develop a scoring system for barriers to colostomy care. Methods: A modified Delphi study was conducted, involving caregivers of pediatric patients with colostomies and health care professionals managing such patients in Southern Africa. Forty individuals were invited to participate (20 caregivers and 20 health care professionals). In Round 1, participants were asked to list barriers to colostomy care via an online REDCap survey. Three authors (GB, CB, JS) thematically grouped identified barriers. In Round 2, participants rated the relevance of each statement: ≥ 75% agreement defined consensus. A virtual Round 3 refinement meeting was held with an expert panel to finalize the scoring system. Results: Of the 40 invited individuals, 23 (57.5%) participated in Round 1: 12 health care professionals (9 doctors, 2 nurses, and 1 with an unknown profession) and 11 caregivers. Sixteen participants completed Round 2, with consensus reached on all barrier statements. In Round 3, 4 nurses and 4 doctors reviewed and refined the statements, resulting in a final 36-item JPCC barriers to colostomy care scoring system. Conclusion: This study presents the first scoring system specifically designed to measure barriers to pediatric colostomy care in Southern Africa. The scoring system offers a practical framework for research, clinical assessment, and advocacy. Further multicenter validation is recommended to assess its applicability across diverse settings.