Abstract：
BACKGROUND: Life expectancy of children with chronic intestinal failure (CIF) on home parenteral nutrition has greatly improved. Children are now able to grow into adulthood which requires transfer from pediatric to adult health care. A guideline for structured transition is lacking and the demand for a more standardized care for this patient group is necessary. Therefore, we investigated the perceptions of health care professionals from various disciplines working in this specific field, concerning effective interventions regarding transition to adult health care.
OBJECTIVE: To create a standardized protocol which provides practical guidance for health care professionals in order to bridge the gap between pediatric and adult health care and to facilitate successful transition of children with chronic intestinal failure.
METHODS: A survey consisting of 20 interventions for transition was sent out to members of the Intestinal Failure working group of European Reference Network for Rare Inherited Congenital (gastrointestinal and digestive) Anomalies (ERNICA) and the Network of Intestinal Failure and Intestinal Transplant in Europe (NITE) group - European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN) healthcare professionals in 48 medical centers in various countries. Next to 20 interventions, an open-ended question to fill in any other suggestion with respect to most effective intervention was included. Interventions scoring higher than 80% by the participants were included in the protocol. Interventions scoring between 50% and 80% and other own suggestions were discussed during a consensus meeting and included when consensus, defined as unanimous agreement, was reached. Interventions scoring as effective by < 50% of participants were excluded directly.
RESULTS: A total of 80 healthcare professionals from 33 medical centers (participation rate 69%) participated. The protocol consisted of modifiable components expected to be targets of interventions. The most important key outcomes of the survey were: 1) assessment of patient\'s transition readiness and provision of knowledge to the patient by the pediatric team, 2) involvement of parents in the transition process, and 3) collaboration between the pediatric and adult chronic intestinal failure team. In addition it is advised that the transition process should start 1-2 years before transfer. A nurse specialist working in both services should form a bridge. All interventions must be tailor-made and based on the maturity of the patient.
CONCLUSIONS: This study provides a protocol describing transition of children with chronic intestinal failure from pediatric to adult care. This international protocol will serve as practical guidance for pediatric chronic intestinal failure which will provide a more structured, optimal transition process. It is advised to use this protocol as a formal checklist that can be placed in the patient\'s chart to review and track the transition process by CIF team members. Future research investigating transition readiness of CIF patients is needed.
OBJECTIVE: To create a standardized protocol which provides practical guidance for health care professionals in order to bridge the gap between pediatric and adult health care and to facilitate successful transition of children with chronic intestinal failure.
METHODS: A survey consisting of 20 interventions for transition was sent out to members of the Intestinal Failure working group of European Reference Network for Rare Inherited Congenital (gastrointestinal and digestive) Anomalies (ERNICA) and the Network of Intestinal Failure and Intestinal Transplant in Europe (NITE) group - European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN) healthcare professionals in 48 medical centers in various countries. Next to 20 interventions, an open-ended question to fill in any other suggestion with respect to most effective intervention was included. Interventions scoring higher than 80% by the participants were included in the protocol. Interventions scoring between 50% and 80% and other own suggestions were discussed during a consensus meeting and included when consensus, defined as unanimous agreement, was reached. Interventions scoring as effective by < 50% of participants were excluded directly.
RESULTS: A total of 80 healthcare professionals from 33 medical centers (participation rate 69%) participated. The protocol consisted of modifiable components expected to be targets of interventions. The most important key outcomes of the survey were: 1) assessment of patient\'s transition readiness and provision of knowledge to the patient by the pediatric team, 2) involvement of parents in the transition process, and 3) collaboration between the pediatric and adult chronic intestinal failure team. In addition it is advised that the transition process should start 1-2 years before transfer. A nurse specialist working in both services should form a bridge. All interventions must be tailor-made and based on the maturity of the patient.
CONCLUSIONS: This study provides a protocol describing transition of children with chronic intestinal failure from pediatric to adult care. This international protocol will serve as practical guidance for pediatric chronic intestinal failure which will provide a more structured, optimal transition process. It is advised to use this protocol as a formal checklist that can be placed in the patient\'s chart to review and track the transition process by CIF team members. Future research investigating transition readiness of CIF patients is needed.
摘要：
背景：家庭肠外营养治疗的慢性肠衰竭（CIF）儿童的预期寿命大大提高。儿童现在能够长大成人，这需要从儿科转移到成人保健。缺乏结构化过渡的指南，并且需要为该患者群体提供更标准化的护理。因此,我们调查了在这个特定领域工作的各个学科的医疗保健专业人员的看法，关于向成人保健过渡的有效干预措施。
目的：创建一个标准化的方案，为卫生保健专业人员提供实践指导，以弥合儿科和成人保健之间的差距，并促进慢性肠衰竭儿童的成功过渡。
方法：向欧洲罕见遗传性先天性（胃肠道和消化系统）异常参考网络（ERNICA）和欧洲肠道衰竭和肠道移植网络（NITE）小组的肠道衰竭工作组成员发送了一项由20种过渡干预措施组成的调查-欧洲儿科胃肠病学和营养学协会（ESPAN）在各个国家的医疗保健专业人员。接下来是20项干预措施，包括一个不限成员名额的问题，以填补关于最有效干预的任何其他建议。参与者得分高于80％的干预措施包括在方案中。在共识会议期间讨论了得分在50％至80％之间的干预措施以及其他自己的建议，并在共识时包括在内。定义为一致同意，已到达。直接排除<50％参与者有效的干预措施。
结果：共有来自33个医疗中心的80名医疗保健专业人员参加（参与率69%）。该方案由可修改的组成部分组成，预计将成为干预措施的目标。调查的最重要的关键结果是：1）评估患者的过渡准备和儿科团队向患者提供知识，2）父母参与过渡过程，3）儿科和成人慢性肠衰竭团队之间的合作。此外，建议过渡过程应在转移前1-2年开始。在这两种服务中工作的护士专家应该构成桥梁。所有干预措施都必须根据患者的成熟度进行定制。
结论：本研究提供了一个方案，描述了慢性肠衰竭儿童从儿童护理到成人护理的过渡。该国际协议将作为儿科慢性肠衰竭的实用指南，将提供更结构化的，最佳过渡过程。建议将该方案用作正式检查表，该检查表可放置在患者的图表中，以由CIF团队成员审查和跟踪过渡过程。需要进一步研究CIF患者的过渡准备情况。
目的：创建一个标准化的方案，为卫生保健专业人员提供实践指导，以弥合儿科和成人保健之间的差距，并促进慢性肠衰竭儿童的成功过渡。
方法：向欧洲罕见遗传性先天性（胃肠道和消化系统）异常参考网络（ERNICA）和欧洲肠道衰竭和肠道移植网络（NITE）小组的肠道衰竭工作组成员发送了一项由20种过渡干预措施组成的调查-欧洲儿科胃肠病学和营养学协会（ESPAN）在各个国家的医疗保健专业人员。接下来是20项干预措施，包括一个不限成员名额的问题，以填补关于最有效干预的任何其他建议。参与者得分高于80％的干预措施包括在方案中。在共识会议期间讨论了得分在50％至80％之间的干预措施以及其他自己的建议，并在共识时包括在内。定义为一致同意，已到达。直接排除<50％参与者有效的干预措施。
结果：共有来自33个医疗中心的80名医疗保健专业人员参加（参与率69%）。该方案由可修改的组成部分组成，预计将成为干预措施的目标。调查的最重要的关键结果是：1）评估患者的过渡准备和儿科团队向患者提供知识，2）父母参与过渡过程，3）儿科和成人慢性肠衰竭团队之间的合作。此外，建议过渡过程应在转移前1-2年开始。在这两种服务中工作的护士专家应该构成桥梁。所有干预措施都必须根据患者的成熟度进行定制。
结论：本研究提供了一个方案，描述了慢性肠衰竭儿童从儿童护理到成人护理的过渡。该国际协议将作为儿科慢性肠衰竭的实用指南，将提供更结构化的，最佳过渡过程。建议将该方案用作正式检查表，该检查表可放置在患者的图表中，以由CIF团队成员审查和跟踪过渡过程。需要进一步研究CIF患者的过渡准备情况。
