de Beaufort, Cunera M.C., Aminoff, Dalia, de Blaauw, Ivo, Crétolle, Célia, Dingemann, Jens, Durkin, Natalie, Feitz, Wout F.J., Fruithof, Jo Anne, Grano, Caterina, Burgos, Carmen Mesas, Schwarzer, Nicole, Slater, Graham, Soyer, Tutku, Violani, Cristiano, Wijnen, Rene, de Coppi, Paolo, Gorter, Ramon R., de Beaufort, Cunera M.C., Aminoff, Dalia, de Blaauw, Ivo, Crétolle, Célia, Dingemann, Jens, Durkin, Natalie, Feitz, Wout F.J., Fruithof, Jo Anne, Grano, Caterina, Burgos, Carmen Mesas, Schwarzer, Nicole, Slater, Graham, Soyer, Tutku, Violani, Cristiano, Wijnen, Rene, de Coppi, Paolo, and Gorter, Ramon R.
Background: Transition of care (TOC; from childhood into adulthood) of patients with anorectal malformations (ARM) and Hirschsprung disease (HD) ensures continuation of care for these patients. The aim of this international study was to assess the current status of TOC and adult care (AC) programs for patients with ARM and HD. Methods: A survey was developed by members of EUPSA, ERN eUROGEN, and ERNICA, including patient representatives (ePAGs), comprising of four domains: general information, general questions about transition to adulthood, and disease-specific questions regarding TOC and AC programs. Recruitment of centres was done by the ERNs and EUPSA, using mailing lists and social media accounts. Only descriptive statistics were reported. Results:In total, 82 centres from 21 different countries entered the survey. Approximately half of them were ERN network members. Seventy-two centres (87.8%) had a self-reported area of expertise for both ARM and HD. Specific TOC programs were installed in 44% of the centres and AC programs in 31% of these centres. When comparing centres, wide variation was observed in the content of the programs. Conclusion: Despite the awareness of the importance of TOC and AC programs, these programs were installed in less than 50% of the participating centres. Various transition and AC programs were applied, with considerable heterogeneity in implementation, content and responsible caregivers involved. Sharing best practice examples and taking into account local and National Health Care Programs might lead to a better continuation of care in the future. Level of Evidence: III.