Adolescents’ involvement in decision making during specialty care visits for pediatric chronic illness: Development and evaluation of a new measure and implications for self-management

项目摘要/摘要 提供者、家长和青少年之间的共享决策(SDM)被认为是以下过程之一 对慢性病进行自我管理。让青年参与决策的适当概念模型 必须关注青年-家长-提供者三合会，认识到青年参与的方式有多种 在决策过程中，强调父母、提供者和青少年的决策行为 角色应该随着发展而变化。该领域缺乏了解其本质的实证研究 父母-青少年-提供者关于不同行为模式随时间的决定和结果的互动， 包括对患有慢性病的青年的依从性和健康结果。这种研究的缺乏至少是由于 在一定程度上，这是由于缺乏可行、可靠、有效和概念上合理的衡量标准来评估该综合体 医疗会诊中决策行为的相互作用。这项建议的主要目标是 制定衡量青少年在儿科慢性病门诊期间参与决策的方法 疾病(特别是1型糖尿病、镰状细胞病、幼年特发性关节炎和炎症性肠炎 疾病)。目标1是利用对青年、父母和提供者的半结构化定性访谈(研究1， 阶段1)和对青少年和父母的认知访谈(研究1，阶段2)，以制定新的 测量-决策参与度量表-医疗接触(DMIS-ME)-并确保一致性 参与者对项目的解释和意图之间的差异。目标2是评估心理测量学特性和 DMIS-ME的效度，利用经典和现代测试理论。有效性将通过以下方式进行评估 DMIS-ME量表是否与青年年龄、决策自我效能感、感知的全球健康、 自我管理能力，以及忠于职守。次要目标2是开发访问配置文件类的类型学，基于 在DMIS-ME分量表上，使用潜在阶级分析，并检查阶级是否根据社会- 对于目标2(研究2)，我们将招募和评估青年及其 家长在参加完与其慢性病相关的门诊专科护理后立即就诊。他们会 完成DMIS-ME和决策自我效能感、感知全球健康、自我管理的测量 技能和忠诚度。目标3是识别和描述青少年在感知到的种族/种族差异 根据目标1和目标2的数据参与决策。DMIS-ME的开发解决了 儿科自我管理和决策领域的严重差距。DMIS-ME可用于 未来的研究将以多维的方式描述年轻人的决策参与，这解释了 青年-家长-提供者三合会，确定参与的结果，并告知发展和评估 干预措施，以加强青年参与决策，并最终促进健康行为和 结果，随着它们的成熟。

PROJECT SUMMARY/ABSTRACT Shared decision making (SDM) between providers, parents, and youth is posited to be one of the processes of self-management for a chronic condition. Adequate conceptual models for involving youth in decision making must attend to the youth-parent-provider triad, recognize that there are multiple ways for youth to be involved in the process of decision making, and underscore that parent, provider, and youth decision making behaviors and roles should change with development. The field lacks empirical research to understand the nature of parent-youth-provider interactions about decisions and outcomes of different patterns of behavior over time, including adherence and health outcomes in youth with a chronic illness. This lack of research is due, at least in part, to the absence of feasible, reliable, valid, and conceptually sound measures that assess the complex interplay of decision making behaviors during medical encounters. The primary objective of this proposal is to develop a measure of youths’ involvement in decision making during outpatient visits for pediatric chronic illness (specifically, type 1 diabetes, sickle cell disease, juvenile idiopathic arthritis, and inflammatory bowel disease). Aim 1 is to utilize semi-structured qualitative interviews with youth, parents, and providers (Study 1, Phase 1) and cognitive interviews with youth and parents (Study 1, Phase 2) to develop items for a new measure- the Decision Making Involvement Scale-Medical Encounters (DMIS-ME)- and ensure alignment between participant interpretation and intent of the items. Aim 2 is to evaluate the psychometric properties and validity of the DMIS-ME, utilizing both classical and modern test theory. Validity will be assessed by examining whether DMIS-ME subscales are associated with youth age, decision self-efficacy, perceived global health, self-management skills, and adherence. Secondary Aim 2 is to develop a typology of visit profile classes based on DMIS-ME subscales, using latent class analysis, and examine whether the classes vary based on socio- demographics and variables tested in Aim 2. For Aim 2 (Study 2), we will enroll and assess youth and their parents, immediately after attending an outpatient specialty care visit related to their chronic illness. They will complete the DMIS-ME and measures of decision self-efficacy, perceived global health, self-management skills, and adherence. Aim 3 is to identify and describe ethnic/racial disparities in youths’ perceived involvement in decision making based on data from Aim 1 and 2. The development of the DMIS-ME addresses a critical gap in the field of pediatric self-management and decision making. The DMIS-ME can be used in future research to describe youths’ decision making involvement in a multidimensional way that accounts for the youth-parent-provider triad, identify outcomes of involvement, and inform the development and evaluation of interventions to enhance youth involvement in decision making, and ultimately, health behaviors and outcomes, as they mature.