Department of Pediatrics, University of Utah, Salt Lake City, UT.
J Dev Behav Pediatr. 2021 Apr 1;42(3):182-190. doi: 10.1097/DBP.0000000000000877.
To compare the perspectives of caregivers of children with autism receiving care at the Neurobehavior Healthy Outcomes Medical Excellence (HOME) Program, an interdisciplinary clinic that provides primary care and behavioral/mental health services for patients with autism and other developmental disabilities, with those responding to the 2016 National Survey of Children's Health (NSCH). We focused on ratings related to shared decision-making, care coordination, family-centered care, and care within a medical home.
We administered a subset of items from the 2016 NSCH to caregivers of children with autism enrolled in HOME and compared responses with the same items from a nationally representative group of caregivers of children with autism who completed the 2016 NSCH. We compared the proportions that reported receiving shared decision-making, care coordination, family-centered care, care within a medical home, and unmet needs among the 2 study groups using Poisson regression, controlling for age, sex, race/ethnicity, payor, autism severity, and intellectual disability (ID).
Compared with the NSCH cohort (n = 1151), children enrolled in HOME (n = 129) were older, more often female, had severe autism, and had co-occurring ID. Caregivers perceived that children receiving care within HOME more often received family-centered, coordinated care within a medical home compared with a national sample of children with autism. HOME enrollees also reported increased access to behavioral treatments and adult transition services with less financial burden compared with the national sample.
An interdisciplinary clinic model may best serve children with autism, especially those with higher severity symptoms and co-occurring conditions.
比较在神经行为健康结果卓越医疗（HOME）计划中接受护理的自闭症儿童照顾者的观点，该计划是一个跨学科诊所，为自闭症和其他发育障碍患者提供初级保健和行为/心理健康服务，并与 2016 年全国儿童健康调查（NSCH）的回应者进行比较。我们专注于与共享决策、护理协调、以家庭为中心的护理以及医疗家庭内护理相关的评分。
我们向 HOME 计划中自闭症儿童的照顾者提供了 2016 年 NSCH 的一部分项目，并将其与完成了 2016 年 NSCH 的具有代表性的自闭症儿童照顾者的相同项目进行了比较。我们使用泊松回归比较了这两个研究组在接受共享决策、护理协调、以家庭为中心的护理、医疗家庭内护理以及未满足需求方面的比例，控制了年龄、性别、种族/族裔、支付者、自闭症严重程度和智力障碍（ID）。
与 NSCH 队列（n=1151）相比，参加 HOME 计划的儿童（n=129）年龄较大，女性更多，患有严重自闭症，并且存在共病 ID。与全国自闭症儿童样本相比，照顾者认为接受 HOME 护理的儿童更常接受以家庭为中心、在医疗家庭内协调的护理。HOME 参与者还报告说，与全国样本相比，他们更容易获得行为治疗和成人过渡服务，并且财务负担减轻。
跨学科诊所模式可能最适合自闭症儿童，尤其是那些症状更严重且存在共病的儿童。
