Abstract：
OBJECTIVE: Structured transition of adolescents and young adults with a chronic endocrine disease from paediatric to adult care is important. Until now, no data on time and resources required for the necessary components of the transition process and the associated costs are available.
METHODS: In a prospective cohort study of 147 patients with chronic endocrinopathies, for the key elements of a structured transition pathway including (i) assessment of patients\' disease-related knowledge and needs, (ii) required education and counselling sessions, (iii) compiling an epicrisis and a transfer appointment of the patient together with the current paediatric and the future adult endocrinologist resource consumption and costs were determined.
RESULTS: One hundred and forty-three of 147 enroled patients (97.3%) completed the transition pathway and were transferred to adult care. The mean time from the decision to start the transition process to the final transfer consultation was 399 ± 159 days. Transfer consultations were performed in 143 patients, including 128 patients jointly with the future adult endocrinologist. Most consultations were performed by a multidisciplinary team consisting of a paediatric and adult endocrinologist, psychologist, nurse, and a social worker acting also as a case manager with a median of three team members and lasted 87.6 ± 23.7 min. The mean cumulative costs per patient of all key elements were 519 ± 206 Euros. In addition, costs for case management through the transition process were 104.8 ± 28.0 Euros.
CONCLUSIONS: Using chronic endocrine diseases as an example, it shows how to calculate the time and cost of a structured transition pathway from paediatric to adult care, which can serve as a starting point for sustainable funding for other chronic rare diseases.
METHODS: In a prospective cohort study of 147 patients with chronic endocrinopathies, for the key elements of a structured transition pathway including (i) assessment of patients\' disease-related knowledge and needs, (ii) required education and counselling sessions, (iii) compiling an epicrisis and a transfer appointment of the patient together with the current paediatric and the future adult endocrinologist resource consumption and costs were determined.
RESULTS: One hundred and forty-three of 147 enroled patients (97.3%) completed the transition pathway and were transferred to adult care. The mean time from the decision to start the transition process to the final transfer consultation was 399 ± 159 days. Transfer consultations were performed in 143 patients, including 128 patients jointly with the future adult endocrinologist. Most consultations were performed by a multidisciplinary team consisting of a paediatric and adult endocrinologist, psychologist, nurse, and a social worker acting also as a case manager with a median of three team members and lasted 87.6 ± 23.7 min. The mean cumulative costs per patient of all key elements were 519 ± 206 Euros. In addition, costs for case management through the transition process were 104.8 ± 28.0 Euros.
CONCLUSIONS: Using chronic endocrine diseases as an example, it shows how to calculate the time and cost of a structured transition pathway from paediatric to adult care, which can serve as a starting point for sustainable funding for other chronic rare diseases.
摘要：
目的：患有慢性内分泌疾病的青少年从儿科到成人护理的结构性转变很重要。直到现在,没有关于过渡过程必要组成部分所需的时间和资源以及相关成本的数据。
方法：在147例慢性内分泌疾病患者的前瞻性队列研究中，对于结构化过渡途径的关键要素，包括（i）评估患者的疾病相关知识和需求，(ii)所需的教育和咨询课程，（iii）确定了患者的危机和转移任命以及当前的儿科和未来的成人内分泌学家资源消耗和成本。
结果：147名接受治疗的患者中有143名（97.3%）完成了过渡途径，并转入成人护理。从决定开始过渡过程到最终转移咨询的平均时间为399±159天。143名患者进行了转移咨询，包括128名与未来的成人内分泌学家共同治疗的患者。大多数会诊是由一个由儿科和成人内分泌学家组成的多学科小组进行的,心理学家,护士,一名社会工作者也担任案件经理，中位数为三名团队成员，持续了87.6±23.7分钟。每位患者所有关键要素的平均累积成本为519±206欧元。此外,通过过渡过程的病例管理成本为104.8±28.0欧元。
结论：以慢性内分泌疾病为例，它显示了如何计算从儿科到成人护理的结构化过渡途径的时间和成本，这可以作为其他慢性罕见疾病可持续资助的起点。
方法：在147例慢性内分泌疾病患者的前瞻性队列研究中，对于结构化过渡途径的关键要素，包括（i）评估患者的疾病相关知识和需求，(ii)所需的教育和咨询课程，（iii）确定了患者的危机和转移任命以及当前的儿科和未来的成人内分泌学家资源消耗和成本。
结果：147名接受治疗的患者中有143名（97.3%）完成了过渡途径，并转入成人护理。从决定开始过渡过程到最终转移咨询的平均时间为399±159天。143名患者进行了转移咨询，包括128名与未来的成人内分泌学家共同治疗的患者。大多数会诊是由一个由儿科和成人内分泌学家组成的多学科小组进行的,心理学家,护士,一名社会工作者也担任案件经理，中位数为三名团队成员，持续了87.6±23.7分钟。每位患者所有关键要素的平均累积成本为519±206欧元。此外,通过过渡过程的病例管理成本为104.8±28.0欧元。
结论：以慢性内分泌疾病为例，它显示了如何计算从儿科到成人护理的结构化过渡途径的时间和成本，这可以作为其他慢性罕见疾病可持续资助的起点。
