Center for the Evaluation of Value and Risk in Health, Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, MA, USA.
Tufts University School of Medicine, Boston, MA, USA.
Pharmacoeconomics. 2019 Apr;37(4):541-551. doi: 10.1007/s40273-019-00783-8.
Few studies have used preference-based quality-of-life outcomes to assess how autism spectrum disorders (ASDs) affect children and parents, and none have examined variation by ASD severity.
Our objective was to derive parent valuations of child and parent health associated with varying ASD severity levels.
Parents of children aged 3-17 years with and without ASD were selected from a nationally representative research panel to complete a survey. We asked parents time trade-off (TTO) questions to value their own and their child's current health. Parents of children with ASD were asked to report the severity of their child's core ASD symptoms. We calculated utility values from each TTO amount, and used a two-part regression model to estimate the change in parent-reported child health utility, as well as parent health utility, associated with ASD diagnosis and increasing symptom severity, controlling for respondent and child characteristics.
Sixty-nine percent of parents responded (final sample size was 135 in the ASD group and 120 in the comparison group). In adjusted analyses, there was a 0.12 (95% confidence interval [CI] 0.03-0.21) decrease in the parent-reported health utility of children with ASD, a 15% decrease from the mean health utility of children without ASD. On average, having a child with ASD was not significantly associated with a decrease in parent health utility, but there was a 0.14 (95% CI 0.01-0.26) reduction in health utility among parents of children with severe ASD, a 15% decrease from the comparison group mean.
Overall, ASD had a significant impact on parent-reported child health utility, and the health utility of parents of children with severe ASD.
很少有研究使用基于偏好的生活质量结果来评估自闭症谱系障碍（ASD）如何影响儿童及其父母，也没有研究过 ASD 严重程度的变化。
我们旨在得出与 ASD 严重程度水平变化相关的儿童和父母健康的父母评估值。
从全国代表性研究小组中选择了 3-17 岁患有和不患有 ASD 的儿童的父母来完成一项调查。我们要求父母进行时间权衡（TTO）问题，以评估他们自己和孩子的当前健康状况。患有 ASD 的儿童的父母被要求报告其孩子核心 ASD 症状的严重程度。我们从每个 TTO 金额中计算出效用值，并使用两部分回归模型来估计与 ASD 诊断和症状严重程度增加相关的父母报告的儿童健康效用以及父母健康效用的变化，同时控制了受访者和儿童的特征。
69%的父母做出了回应（最终 ASD 组的样本量为 135 人，对照组为 120 人）。在调整分析中，患有 ASD 的儿童的父母报告的健康效用平均降低了 0.12（95%置信区间 [CI] 0.03-0.21），比没有 ASD 的儿童的平均健康效用降低了 15%。平均而言，患有 ASD 的孩子并不会显著降低父母的健康效用，但患有严重 ASD 的孩子的父母的健康效用降低了 0.14（95%CI 0.01-0.26），比对照组的平均水平降低了 15%。
总体而言，ASD 对父母报告的儿童健康效用以及患有严重 ASD 的儿童的父母的健康效用有显著影响。
