Abstract：
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.
CONCLUSIONS: 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.
METHODS: III.
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.
CONCLUSIONS: 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.
METHODS: III.
摘要：
背景：肛门直肠畸形（ARM）和先天性巨结肠（HD）患者的护理过渡（TOC；从儿童到成年）确保了对这些患者的持续护理。这项国际研究的目的是评估ARM和HD患者的TOC和成人护理（AC）计划的现状。
方法：EUPSA成员开展了一项调查，ERNeUROGEN,和Ernica,包括患者代表（ePAG），由四个域组成:一般信息，关于过渡到成年的一般问题，以及有关TOC和AC计划的特定疾病问题。中心的招聘由ERN和EUPSA完成，使用邮件列表和社交媒体帐户。仅报告了描述性统计数据。
结果：总计，来自21个不同国家的82个中心参加了调查。其中大约一半是ERN网络成员。72个中心（87.8％）在ARM和HD方面都有自我报告的专业领域。44％的中心安装了特定的TOC程序，而31％的中心安装了AC程序。当比较中心时，在节目的内容中观察到了很大的差异。
结论：尽管认识到TOC和AC项目的重要性，不到50%的参与中心安装了这些程序。应用了各种过渡和AC程序，在实施方面具有相当大的异质性，内容和负责任的护理人员。分享最佳实践示例并考虑到地方和国家医疗保健计划可能会导致将来更好地继续护理。
方法：III.
方法：EUPSA成员开展了一项调查，ERNeUROGEN,和Ernica,包括患者代表（ePAG），由四个域组成:一般信息，关于过渡到成年的一般问题，以及有关TOC和AC计划的特定疾病问题。中心的招聘由ERN和EUPSA完成，使用邮件列表和社交媒体帐户。仅报告了描述性统计数据。
结果：总计，来自21个不同国家的82个中心参加了调查。其中大约一半是ERN网络成员。72个中心（87.8％）在ARM和HD方面都有自我报告的专业领域。44％的中心安装了特定的TOC程序，而31％的中心安装了AC程序。当比较中心时，在节目的内容中观察到了很大的差异。
结论：尽管认识到TOC和AC项目的重要性，不到50%的参与中心安装了这些程序。应用了各种过渡和AC程序，在实施方面具有相当大的异质性，内容和负责任的护理人员。分享最佳实践示例并考虑到地方和国家医疗保健计划可能会导致将来更好地继续护理。
方法：III.
