Gilmore Daniel, Radford Deondray, Coyne Alex, Hanks Christopher, Coury Daniel L, Hess Amy, Garvin Jennifer H, Hand Brittany N
School of Health and Rehabilitation Sciences at The Ohio State University, 453 W 10th Ave., Columbus, OH 43210, United States.
Center for Autism Services and Transition, The Ohio State University Wexner Medical Center, 3691 Ridge Mill Dr, Hilliard, OH 43026, United States.
Health Care Transit. 2023 Nov 7;1:100029. doi: 10.1016/j.hctj.2023.100029. eCollection 2023.
Healthcare independence refers to an individual's ability to participate in and manage their healthcare by using specific skills like communicating with providers and scheduling appointments. Understanding healthcare independence among autistic young adults is important to designing healthcare systems that provide equitable support for autistic people throughout their lives.
To quantify changes in autistic adults' healthcare independence over time and understand factors associated with change in healthcare independence.
We administered a measure of healthcare skills, the Transition Readiness Assessment Questionnaire (TRAQ), to n = 27 autistic young adults who provided a self-report, and n = 21 autistic young adults who participated via proxy-report by supporters, at one autism-specialized primary care clinic. Participants completed the TRAQ at baseline, six months, and 12 months. We used repeated measures generalized linear mixed models to quantify changes in healthcare independence over time, controlling for demographic factors, executive functioning, restrictive and repetitive behaviors, and number of clinic visits. To understand factors associated with change in healthcare independence, we completed follow-up semi-structured interviews with n = 6 autistic young adults and n = 5 supporters of autistic young adults.
Autistic young adults who participated via self-report showed statistically significantly increases in healthcare independence between baseline and 12 months and between six months and 12 months, and significant increases on most TRAQ subdomains over time (e.g., appointment keeping, managing medications). Autistic young adults who participated via proxy-report showed no significant changes in healthcare independence over time, and significant improvement on the management of activities subdomain between baseline and 12 months. Changes in healthcare independence were associated with interactions with providers, individual health changes, consistent support needs, and community resources.
At one autism-specialized primary care clinic, some autistic young adults may demonstrate improvements in healthcare independence, but other autistic young adults may require additional support strategies to increase healthcare independence. Future studies among larger samples are needed to obtain generalizable understanding of healthcare independence for autistic adults.
医疗保健独立性是指个人通过运用与医疗服务提供者沟通和安排预约等特定技能来参与和管理自身医疗保健的能力。了解自闭症青年成人的医疗保健独立性对于设计能在其一生中为自闭症患者提供公平支持的医疗保健系统至关重要。
量化自闭症成人医疗保健独立性随时间的变化，并了解与医疗保健独立性变化相关的因素。
我们在一家自闭症专科初级保健诊所，对n = 27名进行自我报告的自闭症青年成人以及n = 21名通过支持者进行代理报告参与的自闭症青年成人，实施了一项医疗保健技能测量工具——过渡准备评估问卷（TRAQ）。参与者在基线、6个月和12个月时完成TRAQ。我们使用重复测量广义线性混合模型来量化医疗保健独立性随时间的变化，同时控制人口统计学因素、执行功能、限制性和重复性行为以及就诊次数。为了解与医疗保健独立性变化相关的因素，我们对n = 6名自闭症青年成人和n = 5名自闭症青年成人的支持者进行了后续半结构化访谈。
通过自我报告参与的自闭症青年成人在基线至12个月之间以及6个月至12个月之间，医疗保健独立性在统计学上有显著提高，并且随着时间推移，大多数TRAQ子领域都有显著改善（例如，遵守预约、管理药物）。通过代理报告参与的自闭症青年成人的医疗保健独立性随时间没有显著变化，但在基线至12个月之间，活动管理子领域有显著改善。医疗保健独立性的变化与与医疗服务提供者的互动、个人健康变化、持续的支持需求以及社区资源有关。
在一家自闭症专科初级保健诊所，一些自闭症青年成人可能在医疗保健独立性方面有所改善，但其他自闭症青年成人可能需要额外的支持策略来提高医疗保健独立性。未来需要对更大样本进行研究，以获得关于自闭症成人医疗保健独立性的可推广理解。
