Developing a tool to support shared decision making in JIA between adolescents, parents, and providers

项目摘要/摘要 这项为期5年的K23计划的总体目标是支持Melissa Mannion，MD，MSPH成为 独立调查者使用医疗决策方法来评估和改进个性化治疗 幼年特发性关节炎(JIA)患者的治疗方案。贾是风湿病中最常见的一种 是一种终生慢性病，需要长期治疗，以防止疼痛、身体丧失 功能障碍和永久性损伤。虽然有关于初始治疗的建议，但当 无效，下一个最佳选择不太清楚，可能会受到患者、父母和提供者偏好的影响。 由于这种不确定性和治疗选项的各种属性，共享决策(SDM)是 建议用于治疗决策，可以减少决策冲突，提高护理满意度，以及 提高生活质量。在常规临床护理中纳入SDM的情况很差，在儿科领域，往往依赖于 父母分享医疗信息并做出决定。患有JIA的亲子二人组报告不同 可接受的症状状态阈值和不同的治疗经验，包括依从率和 负面治疗效果，但尚不清楚这种不协调如何影响随后的偏好、决定 和结果。迫切需要确定青少年和父母的偏好，并将其纳入 与JIA用药和治疗目标相关的决定。因此，该项目的具体目标包括 目的1：根据患者、父母、患者和患者的情况，确定JIA治疗升级SDM工具的最佳特征 和提供者，目标2：比较患者和父母对治疗的偏好和JIA的目标优先顺序，并 3：在父母和青少年患者中开发和试行儿童风湿病诊所的测试决策辅助工具 在治疗变更时与JIA合作。我将使用名义分组技术来识别 决策辅助，将有利地影响护理，并促进患者、父母和提供者在日常工作中采用 临床工作流程。采用离散选择实验和潜类分析方法进行识别和量化 与JIA和JIA青少年的药物选择和治疗目标相关的偏好和权衡 他们的父母。我将在之前进行的定性研究的基础上开发决策辅助工具，以便于 JIA中用于治疗升级的三元(青少年、家长和提供者)SDM，并在临床中对该工具进行初步测试 布景。每个目标的结果将有助于工具的迭代修订，以便它将针对 随后进行了更大规模的试验。我的专家多学科指导团队将在以下方面提供指导和培训 偏爱方法和SDM，特别与儿科三元决策有关。在此结束时 项目，我将在独立的研究生涯中独一无二地使用医疗决策方法来 通过改善患者之间的SDM，改善JIA患者的生活质量和疾病结局 父母和供养者。

PROJECT SUMMARY/ABSTRACT The overall goal of this 5-year K23 proposal is to support Melissa Mannion, MD, MSPH to become an independent investigator using medical decision methodology to evaluate and improve personalized treatment decisions for each patient with juvenile idiopathic arthritis (JIA). JIA is the most common rheumatic disease of childhood and is a life-long chronic disease that requires long-term treatment to prevent pain, loss of physical function, and permanent impairment. While there are recommendations regarding initial therapy, when that is ineffective, the next best option is less clear and can be affected by patient, parent, and provider preferences. Due to this uncertainty and the various attributes of treatment options, shared decision making (SDM) is recommended for treatment decisions and can reduce decisional conflict, improve satisfaction with care, and improve quality of life. Incorporation of SDM in routine clinical care is poor and, in pediatrics, is often reliant on parents sharing medical information and making decisions. Parent-adolescent dyads with JIA report different acceptable symptom state thresholds and different treatment experiences including adherence rates and negative treatment effects, but it is unknown how this discordance affects subsequent preferences, decisions, and outcomes. There is a critical need to identify and incorporate both adolescent and parent preferences into decisions related to JIA medication and treatment targets. Therefore, the specific aims of this project include Aim 1: identify optimal characteristics of a treatment escalation SDM tool in JIA according to patients, parents, and providers, Aim 2: compare patient and parent preferences for treatment and goal priorities of JIA, and Aim 3: develop and pilot test decision aid in a pediatric rheumatology clinic among parent and adolescent patients with JIA at the time of treatment change. I will use nominal group technique to identify characteristics of the decision aid that will favorable impact care and promote adoption by patients, parents, and providers in routine clinical workflow. I will use discrete choice experiment and latent class analysis to identify and quantify preferences and tradeoffs related to medication choices and treatment goals for both adolescents with JIA and their parents. I will develop a decision aid based on previously conducted qualitative research to facilitate triadic (adolescent, parent, and provider) SDM for treatment escalation in JIA and pilot test the tool in a clinical setting. The results of each aim will contribute to iterative revisions of the tool so that it will be optimized for a subsequent larger trial. My expert multidisciplinary mentoring team will provide guidance and training in stated preference methods and SDM, specifically related to pediatric triadic decisions. At the conclusion of this project, I will be uniquely positioned for an independent research career using medical decision methodology to improve the quality of life and disease outcomes for patients with JIA by improving SDM between patients, parents, and providers.