Tsang Vivian W L, Fletcher Sarah, Jassemi Sara, Smith Sharon
Department of Psychiatry, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada.
Division of Adolescent Health and Medicine, Department of Pediatrics, BC Children's Hospital Vancouver, BC, Canada ; and.
J Dev Behav Pediatr. 2022 May 1;43(4):197-205. doi: 10.1097/DBP.0000000000001024. Epub 2021 Oct 25.
Youth with chronic diseases are required to transition from pediatric to adult care across the world at variable ages in their adolescent years. The aim of this study is to examine perspectives of young patients, caregivers, and physicians in the transition process.
This 3-phase mixed methods research study gathered data using an iterative approach with the collaboration of youth coresearchers. Physician opinions were gathered through a survey. Further data were collected through 15 semistructured, standardized interviews of adolescent medicine physicians. Perspectives of adolescents and young adult (AYA) patients and their caregivers were gathered independently using a 20-item survey. Quantitative data were analyzed with descriptive statistics and sorted by theme.
In phase 1, respondents rated current transition processes as an average 5.19/10 on a 10-point Likert scale (1 = poor and 10 = excellent) with no participants rating 9 or 10 of 10. The top barrier identified was a lack of communication between pediatric and adult doctors (71.0%). The top ranked strategy for improvement was to provide formal transition guidelines (69.8%). In phase 2, specific concerns include lack of insurance coverage, lack of physicians available to take on youth transitioning to adult care who are also knowledgeable regarding pediatric conditions, and lack of funding or staff support for transition clinics. In phase 3, most of the youth surveyed (52%) reported that their physicians have not involved them in conversations about transitioning. AYA patients prefer the point of transfer to occur with other life transitions such as graduation, and caregivers prefer transfer to happen during times of stability where their children can dedicate adequate time to their health.
Fulfilling youth desire for increased patient autonomy and ownership can help overcome their poor perception of the transition process. Increased physician training in adolescent health and improvements in post-transition community plans may be beneficial to prevent loss to follow-up among young patients across medical disciplines. Successful transition into adult care requires a unique process for each youth and requires adequate preparation from the pediatric front, empowerment of young patients and their families, and continuity of care by adult providers.
在世界各地，患有慢性病的青少年需要在青春期的不同年龄从儿科护理过渡到成人护理。本研究的目的是探讨年轻患者、护理人员和医生在过渡过程中的观点。
这项三阶段混合方法研究采用迭代方法，在青年共同研究者的协作下收集数据。通过调查收集医生的意见。通过对青少年医学医生进行15次半结构化、标准化访谈收集更多数据。使用一份包含20个条目的调查问卷独立收集青少年和青年成人（AYA）患者及其护理人员的观点。定量数据采用描述性统计进行分析，并按主题分类。
在第一阶段，受访者在10分制的李克特量表上对当前过渡过程的平均评分为5.19分（1分=差，10分=优秀），没有参与者给出9分或10分。确定的首要障碍是儿科医生和成人医生之间缺乏沟通（71.0%）。排名第一的改进策略是提供正式的过渡指南（69.哪咤之魔童降世8%）。在第二阶段，具体问题包括缺乏保险覆盖、缺乏能够接收过渡到成人护理的青少年且对儿科疾病也有了解的医生，以及过渡诊所缺乏资金或工作人员支持。在第三阶段，大多数接受调查的青少年（52%）报告称，他们的医生没有让他们参与关于过渡的谈话。AYA患者更喜欢在毕业等其他生活转变时进行转诊，而护理人员则更喜欢在孩子能够有足够时间关注自身健康的稳定时期进行转诊。
满足青少年对增强患者自主权和主导权的愿望有助于克服他们对过渡过程的不良认知。加强医生在青少年健康方面的培训以及改善过渡后社区计划可能有助于防止各医学学科的年轻患者失访。成功过渡到成人护理需要针对每个青少年制定独特的过程，需要儿科方面做好充分准备，增强年轻患者及其家庭的能力，并由成人医疗服务提供者提供持续护理。
