Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, North Carolina.
Department of Pediatrics, Keck School of Medicine of USC, Los Angeles, California.
J Adolesc Health. 2024 Oct;75(4):635-641. doi: 10.1016/j.jadohealth.2024.05.007. Epub 2024 Jul 12.
There is limited caregiver-reported evidence determining health care transition (HCT) outcomes for their adolescents/young adults with special health care needs (AYA-SHCN). A subcommittee of the International and Interdisciplinary Healthcare Transition Research Consortium aimed to identify multidimensional outcomes of a successful HCT among AYA-SHCN based on parents/caregivers' perspectives.
After literature review and expert interviews, a three-stage Delphi process identified HCT outcomes based on parents/caregivers' perspectives. Participants were parents/caregivers of patients attending the Victory Junction Therapeutic Camp and a nationally representative sample from Cint Healthcare Digital Solutions Platform. The cumulative 272 responses collected on a Health Insurance Portability and Accountability Act-compliant web-based engine (Qualtrics) rated potential HCT outcomes by level of importance on a Likert scale from 1 (not important) to 9 (very important) and narrowed in subsequent iterations.
The Delphi process included 127 (Stage 1), 82 (Stage 2), and 63 (Stage 3) parents/caregivers. The initial 25 HCT outcomes were narrowed to 13, across four major domains: coping/satisfaction, behavioral, structural, and HCT/healthcare-focused outcomes. The top outcome was "My child takes their medications as prescribed." Several traditionally considered important outcomes for HCT were eliminated.
Thirteen HCT outcomes for AYA-SHCN were identified in four major domains: coping/satisfaction, behavioral, structural, and HCT/healthcare focused. Future research in larger samples would allow stratification to represent diverse patients and caregiver populations. Identifying international consensus-derived outcomes among parents/caregivers is imperative for the evaluation of HCT preparation strategies that ensure appropriate support for diverse AYA-SHCN and their families during this process and enable implementation of the most effective interventions.
针对有特殊医疗需求的青少年/年轻成人（AYA-SHCN）的照顾者，目前仅有有限的文献证据可以确定其医疗过渡（HCT）的结果。国际跨学科医疗过渡研究联盟的一个小组委员会旨在根据父母/照顾者的观点，确定 AYA-SHCN 成功进行 HCT 的多维结果。
在文献回顾和专家访谈之后，一个三阶段德尔菲法过程根据父母/照顾者的观点确定了 HCT 结果。参与者为参加胜利联合治疗营的患者的父母/照顾者，以及 Cint Healthcare Digital Solutions Platform 的全国代表性样本。在符合健康保险流通与责任法案的基于网络的引擎（Qualtrics）上，共收集了 272 位父母/照顾者的累计 272 次回应，他们对潜在的 HCT 结果进行了重要性评分，评分范围从 1（不重要）到 9（非常重要），并在后续迭代中进行了缩小。
德尔菲法过程包括 127 位（第 1 阶段）、82 位（第 2 阶段）和 63 位（第 3 阶段）父母/照顾者。最初的 25 个 HCT 结果缩小到 13 个，分布在四个主要领域：应对/满意度、行为、结构和 HCT/医疗保健重点结果。排名最高的结果是“我的孩子按规定服药。”几个传统上被认为对 HCT 很重要的结果被排除在外。
在四个主要领域中确定了 13 个 AYA-SHCN 的 HCT 结果：应对/满意度、行为、结构和 HCT/医疗保健重点。在更大的样本中进行未来的研究可以分层代表不同的患者和照顾者群体。在父母/照顾者中确定国际共识得出的结果对于评估 HCT 准备策略至关重要，这些策略确保在这个过程中为不同的 AYA-SHCN 及其家庭提供适当的支持，并使最有效的干预措施得以实施。
