Division of Pharmaceutical Outcomes and Policy, Eshelman School of Pharmacy, University of North Carolina, Asheville, North Carolina, USA.
Faculty of Medicine and Health, School of Public Health, Faculty of Medicine and Health, University of Sydney, Sydney, Australia.
Health Expect. 2022 Aug;25(4):1643-1651. doi: 10.1111/hex.13508. Epub 2022 Jun 8.
The preferences of autism stakeholders regarding the top priorities for future autism research are largely unknown.
This study had two objectives: First, to examine what autism stakeholders think new research investments should be and the attributes of investment that they consider important, and second, to explore the feasibility, acceptability and outcomes of two prioritization exercises among autism stakeholders regarding their priorities for future research in autism.
This was a prospective stakeholder-engaged iterative study consisting of best-worst scaling (BWS) and direct prioritization exercise.
A national snowball sample of 219 stakeholders was included: adults with autism, caregivers, service providers and researchers.
The main outcomes measures were attributes that participants value in future research investments, and priority research investments for future research.
Two hundred and nineteen participants completed the exercises, of whom 11% were adults with autism, 58% were parents/family members, 37% were service providers and 21% were researchers. Among stakeholders, the BWS exercises were easier to understand than the direct prioritization, less frequently skipped and yielded more consistent results. The proportion of children with autism affected by the research was the most important attribute for all types of stakeholders. The top three priorities among future research investments were (1) evidence on which child, family and intervention characteristics lead to the best/worst outcomes; (2) evidence on how changes in one area of a child's life are related to changes in other areas; and (3) evidence on dietary interventions. Priorities were similar for all stakeholder types.
The values and priorities examined here provide a road map for investigators and funders to pursue autism research that matters to stakeholders.
Stakeholders completed a BWS and direct prioritization exercise to inform us about their priorities for future autism research.
自闭症利益相关者对于未来自闭症研究的优先事项的偏好很大程度上是未知的。
本研究有两个目的：首先，检查自闭症利益相关者认为新的研究投资应该是什么，以及他们认为重要的投资属性；其次，探索自闭症利益相关者在自闭症未来研究优先事项方面进行两次优先排序练习的可行性、可接受性和结果。
这是一项前瞻性的利益相关者参与的迭代研究，包括最佳最差标度（BWS）和直接优先级排序练习。
纳入了一个全国性的自闭症利益相关者雪球样本，共 219 人：自闭症成年人、照顾者、服务提供者和研究人员。
主要结果测量是参与者对未来研究投资的价值属性，以及对未来研究的优先研究投资。
共有 219 名参与者完成了练习，其中 11%是自闭症成年人，58%是父母/家庭成员，37%是服务提供者，21%是研究人员。在利益相关者中，BWS 练习比直接优先级排序更容易理解，跳过的频率更低，产生的结果更一致。研究对儿童的影响是所有类型的利益相关者最看重的属性。未来研究投资的前三大优先事项是：（1）关于哪些儿童、家庭和干预特征导致最佳/最差结果的证据；（2）关于儿童生活中一个领域的变化如何与其他领域的变化相关的证据；（3）关于饮食干预的证据。所有利益相关者类型的优先级都相似。
这里检查的价值观和优先事项为研究人员和资助者提供了一个路线图，以追求对利益相关者重要的自闭症研究。
利益相关者完成了 BWS 和直接优先级排序练习，以便我们了解他们对未来自闭症研究的优先事项。
