Sakurai Ikuho, Maru Mitsue, Miyamae Takako, Honda Masataka
Department of Nursing, Faculty of Health Sciences, Saitama Prefectural University, Koshigaya, Japan.
School of Nursing, College of Nursing Art and Science, University of Hyogo, Akashi, Japan.
Front Pediatr. 2022 Sep 1;10:956227. doi: 10.3389/fped.2022.956227. eCollection 2022.
Since the Japan Pediatric Society published its "Recommendations on Transitional Care for Patients with Childhood-Onset Chronic Diseases" in 2014, there has been an increased interest in the health care transition of adolescents with childhood-onset chronic diseases in Japan. However, the actual status of healthcare transition was not studied yet. The purpose of this study was to explore the prevalence of transitional support for adolescent patients with childhood-onset chronic disease and the factors hindering their transition. We conducted an anonymous questionnaire survey in August 2020, targeting physicians and nurses involved in health care transition at 494 pediatric facilities in Japan. Survey items included demographic data, health care systems related to transition to adult departments, health care transition programs based on Six Core Elements (establishing transition policy, tracking and monitoring transition progress, assessing patient readiness for transition, developing the transition plan with a medical summary, transferring the patient, completing the transfer/following up with the patient and family), barriers to transition (34-item, 4-point Likert scale), and expectations in supporting transition (multiple-choice responses), which consisted of five items (78 questions); all questions were structured. Descriptive statistics were used for analysis. Of the 225 responses collected (45.5% response rate), 88.0% were from pediatricians. More than 80% of respondents transferred patients of 20 years or older, but only about 15% had took a structured transition process of four or more based on the Six Core Elements. The top transition barriers were "intellectual disability/rare disease" and "dependence on pediatrics" as patient/family factors, and "lack of collaboration with adult healthcare (relationship, manpower/system, knowledge/understanding)" as medical/infrastructure factors. The study provides future considerations, including the promotion of structured health care transition programs, development of transitional support tailored to the characteristics of rare diseases and disorders, and establishment of a support system with adult departments.
自日本儿科学会于2014年发布其《儿童期慢性病患者过渡性照护建议》以来，日本对患有儿童期慢性病的青少年的医疗照护过渡问题的关注度有所提高。然而，医疗照护过渡的实际状况尚未得到研究。本研究的目的是探讨对患有儿童期慢性病的青少年患者进行过渡性支持的普及率以及阻碍他们过渡的因素。我们于2020年8月针对日本494家儿科机构中参与医疗照护过渡工作的医生和护士进行了一项匿名问卷调查。调查项目包括人口统计学数据、与向成人科室过渡相关的医疗照护系统、基于六个核心要素的医疗照护过渡项目（制定过渡政策、跟踪和监测过渡进程、评估患者过渡准备情况、制定包含病历摘要的过渡计划、转诊患者、完成转诊/对患者及家属进行随访）、过渡障碍（34项，4级李克特量表）以及支持过渡的期望（多项选择回答），共包括五个项目（78个问题）；所有问题均为结构化问题。采用描述性统计进行分析。在收集到的225份回复中（回复率为45.5%），88.0%来自儿科医生。超过80%的受访者转诊过20岁及以上的患者，但只有约15%的人采用了基于六个核心要素的四个或更多的结构化过渡流程。最主要的过渡障碍是作为患者/家庭因素的“智力残疾/罕见病”和“依赖儿科”，以及作为医疗/基础设施因素的“与成人医疗缺乏协作（关系、人力/系统、知识/理解）”。该研究提供了未来的思考方向，包括推广结构化医疗照护过渡项目、针对罕见病和疾病特征制定过渡性支持措施，以及建立与成人科室的支持系统。
