Cheak-Zamora Nancy C, Farmer Janet E, Mayfield Wayne A, Clark Mary J, Marvin Alison R, Law J Kiely, Law Paul A
Department of Health Sciences, University of Missouri.
Department of Health Psychology, University of Missouri.
Rehabil Psychol. 2014 Aug;59(3):340-8. doi: 10.1037/a0036725. Epub 2014 Jul 14.
Little is known about accessibility to health care transition (HCT) services (HCT) for youth with autism spectrum disorders (ASD). This study examined how often youth with ASD receive HCT services and how access varied by individual, family, and health system characteristics.
Questionnaires were completed by 101 parents of youth with ASD (ages 12-17 years) enrolled in a national online autism registry. Descriptive statistics and bivariate analysis were used to examine a composite HCT variable and its components.
Fewer than 15% of youth received HCT services. Although 41% received at least 1 HCT discussion, only 3% received all 3. One-quarter had a discussion with their health care provider about transitioning to an adult provider, adult health care needs, or insurance retention, and 31% of providers encouraged youth to take on more responsibilities. Most caregivers reported not needing 1 or more of the discussions. RESULTS varied significantly when the sample was divided by age, with older youth more likely to have received transition services than younger adolescents.
These findings indicate a significant disparity in access to HCT services for youth with ASD. Further research is needed to understand this disparity and develop interventions to improve HCT both for youth with ASD and those with other disabling health conditions. Additionally, many caregivers do not recognize the importance of HCT services. Education and training for caregivers, youth, and providers is essential to ensure all parties are working together to address transition issues early and often.
对于患有自闭症谱系障碍（ASD）的青少年获得医疗保健过渡（HCT）服务的情况，人们了解甚少。本研究调查了患有ASD的青少年接受HCT服务的频率，以及获得服务的机会如何因个体、家庭和卫生系统特征而有所不同。
参与全国在线自闭症登记系统的101名患有ASD的青少年（年龄在12 - 17岁）的家长完成了问卷调查。描述性统计和双变量分析用于检验一个综合HCT变量及其组成部分。
不到15%的青少年接受了HCT服务。虽然41%的青少年至少进行了1次HCT讨论，但只有3%的青少年进行了全部3次讨论。四分之一的青少年与他们的医疗服务提供者讨论了向成人医疗服务提供者过渡、成人医疗保健需求或保险续保问题，31%的医疗服务提供者鼓励青少年承担更多责任。大多数照顾者报告说不需要其中一项或多项讨论。当样本按年龄划分时，结果有显著差异，年龄较大的青少年比年龄较小的青少年更有可能接受过渡服务。
这些发现表明患有ASD的青少年在获得HCT服务方面存在显著差距。需要进一步研究以了解这种差距，并制定干预措施，以改善患有ASD的青少年以及患有其他致残性健康状况的青少年的HCT。此外，许多照顾者没有认识到HCT服务的重要性。对照顾者、青少年和医疗服务提供者的教育和培训对于确保各方共同努力尽早且经常地解决过渡问题至关重要。
