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

项目概要/摘要 供应商，父母和青年之间的共同决策（SDM）被认为是一个过程， 慢性病的自我管理使青年参与决策的适当概念模式 我必须关注青年-父母-提供者三位一体，认识到青年参与的方式有多种 在决策过程中，并强调父母，供应商和青年的决策行为， 角色要随着发展而变化。该领域缺乏实证研究，无法理解 家长-青少年-提供者关于不同行为模式的决策和结果的互动， 包括慢性病青年的依从性和健康结果。这种缺乏研究的情况至少是由于 部分原因是缺乏可行的，可靠的，有效的，概念上合理的措施来评估复杂的 在医疗过程中决策行为的相互作用。这项建议的主要目的是 制定一项衡量青少年参与儿科慢性病门诊决策的指标， 疾病（特别是1型糖尿病、镰状细胞病、幼年特发性关节炎和肠炎 疾病）。目标1是利用与青年、父母和供应商的半结构化定性访谈（研究1， 第一阶段）和与青少年和家长的认知访谈（研究1，第二阶段），以开发新的项目， 衡量-决策参与量表-医疗接触（DMIS-ME）-并确保一致 参与者的解释和项目的意图之间的关系。目的2是评估心理测量学特性， DMIS-ME的有效性，利用经典和现代测试理论。有效性将通过检查 DMIS-ME分量表是否与青年年龄，决策自我效能，感知的全球健康， 自我管理能力和坚持。次要目标2是开发基于以下内容的访问配置文件类别的类型学 在DMIS-ME分量表上，使用潜在类别分析，并检查类别是否基于社会 目标2中测试的人口统计学和变量。就目的2（研究2）而言，我们将招募和评估青少年及其 父母，立即参加门诊专科护理访问后，与他们的慢性疾病。他们将 完成DMIS-ME和决策自我效能、整体健康感知、自我管理的测量 技能和坚持。目标3是确定和描述青年人感知的种族/种族差异， 根据目标1和目标2的数据参与决策。DMIS-ME地址的开发 儿科自我管理和决策领域的一个关键空白。DMIS-ME可用于 未来的研究将以多维的方式描述青少年的决策参与， 青年-父母-提供者三位一体，确定参与的结果，并为发展和评估提供信息 干预措施，以加强青年参与决策，并最终，健康行为， 结果，当他们成熟。

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.