Department of Pediatrics, School of Medicine and Public Health, University of Wisconsin-Madison, Madison, Wisconsin;
Division of General Pediatrics, Harvard Medical School, Harvard University and Boston Children's Hospital, Boston, Massachusetts.
Pediatrics. 2020 Mar;145(3). doi: 10.1542/peds.2019-0673. Epub 2020 Feb 5.
In this study, we sought to establish priorities for a national research agenda for children and youth with special health care needs (CYSHCN) through a structured, multistakeholder, mixed-methods approach.
Using surveys, we solicited responses from >800 members of expert-nominated stakeholder organizations, including CYSHCN families, health care providers, researchers, and policymakers, to identify what research with or about CYSHCN they would like to see in a national research agenda. From 2835 individual free-text responses, 96 research topics were synthesized and combined. Using an adapted RAND/UCLA Appropriateness Method (a modified Delphi approach), an expert panel rated research topics across 3 domains: need and urgency, research impact, and family centeredness. Domains were rated on 9-point Likert scales. Panelist ratings were used to sort research topics into 4 relative-priority ranks. Rank 1 (highest priority) research topics had a median of ≥7 in all domains.
The RAND/UCLA Appropriateness Method was used to prioritize CYSHCN research topics and depict their varying levels of stakeholder-perceived need and urgency, research impact, and family centeredness. In the 15 topics that achieved rank 1, social determinants of health (disparities and rurality), caregiving (family resilience and care at home), clinical-model refinement (effective model elements, labor divisions, telemedicine, and system integration), value (stakeholder-centered value outcomes, return on investment, and alternative payment models), and youth-adult transitions (planning, insurance, and community supports) were emphasized.
High-priority research topics identified by CYSHCN experts and family leaders underscore CYSHCN research trends and guide important directions. This study is the first step toward an efficient and cohesive research blueprint to achieve highly-effective CYSHCN health systems.
本研究采用结构化、多利益相关者、混合方法，为有特殊医疗需求的儿童和青少年（CYSHCN）制定国家研究议程的优先事项。
我们使用调查向 800 多名专家提名的利益相关者组织成员（包括 CYSHCN 家庭、医疗保健提供者、研究人员和政策制定者）征求意见，以了解他们希望在国家研究议程中看到哪些针对或关于 CYSHCN 的研究。从 2835 条个人自由文本回复中，综合并合并了 96 个研究主题。使用经过改编的 RAND/UCLA 适宜性方法（一种改良的德尔菲法），一个专家小组对 3 个领域的研究主题进行了评估：需求和紧迫性、研究影响和以家庭为中心。领域按 9 分李克特量表进行评分。小组成员的评分用于将研究主题分为 4 个相对优先级等级。等级 1（最高优先级）的研究主题在所有领域的中位数均≥7。
RAND/UCLA 适宜性方法用于确定 CYSHCN 研究主题的优先级，并描述它们在利益相关者感知需求和紧迫性、研究影响和以家庭为中心方面的不同程度。在达到等级 1 的 15 个主题中，突出强调了健康的社会决定因素（差异和农村地区）、照护（家庭复原力和家庭照护）、临床模型细化（有效模型要素、分工、远程医疗和系统整合）、价值（以利益相关者为中心的价值结果、投资回报率和替代支付模式）以及青年-成人过渡（规划、保险和社区支持）。
CYSHCN 专家和家庭领导人确定的高优先级研究主题强调了 CYSHCN 研究趋势，并为重要方向提供了指导。这项研究是制定高效、有凝聚力的研究蓝图以实现高效的 CYSHCN 卫生系统的第一步。
