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

开发一种工具来支持青少年、家长和提供者之间在 JIA 方面的共同决策

• 批准号: 10739684
• 负责人: Melissa Mannion
• 金额: $ 17.59万
• 依托单位: UNIVERSITY OF ALABAMA AT BIRMINGHAM
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-15 至 2028-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10739684
• 关键词: Achievement; Adolescent; Adoption; Affect; Asthma; Caregivers; Caring; Characteristics; Child; Childhood; Chronic Childhood Arthritis; Chronic Disease; Clinic; Clinic Visits; Clinical; Conflict (Psychology); Decision Aid; Decision Making; Disease; Disease Outcome; Disease-Modifying Second-Line Drugs; Drug Prescriptions; Epidemiology; Frequencies; Goals; Impairment; Individual; Insulin-Dependent Diabetes Mellitus; Knowledge; Medical; Mental Depression; Mentors; Methodology; Methods; Outcome; Pain; Parents; Patient Outcomes Assessments; Patient Preferences; Patient-Focused Outcomes; Patients; Pediatrics; Personal Satisfaction; Pharmaceutical Preparations; Phenotype; Physical Function; Positioning Attribute; Process; Provider; Qualitative Methods; Qualitative Research; Quality of life; Randomized, Controlled Trials; Recommendation; Reporting; Research; Research Personnel; Rheumatism; Rheumatology; Risk; Route; Science; Site; Social Functioning; Symptoms; Techniques; Time; Training; Treatment Step; Uncertainty; adherence rate; adolescent patient; arm; care providers; career; clinical care; disability; evidence based guidelines; experience; experimental study; feasibility trial; improved; improved outcome; learning network; medication compliance; multidisciplinary; parental influence; personalized decision; personalized medicine; pilot test; preference; prevent; reduce symptoms; rheumatologist; satisfaction; shared decision making; side effect; skills; symposium; tool; treatment and outcome; treatment effect; user centered design

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.

项目概要/摘要 这项为期 5 年的 K23 提案的总体目标是支持 Melissa Mannion（医学博士、公共卫生硕士）成为一名 独立研究者使用医疗决策方法来评估和改进个性化治疗 每位幼年特发性关节炎 (JIA) 患者的决定。 JIA 是最常见的风湿病 童年时期的疾病，是一种终生慢性疾病，需要长期治疗以防止疼痛、体力损失 功能和永久性损伤。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明确，并且可能受到患者、家长和提供者偏好的影响。 由于这种不确定性和治疗方案的各种属性，共享决策（SDM）是 推荐用于治疗决策，可以减少决策冲突，提高护理满意度，以及 提高生活质量。将 SDM 纳入常规临床护理的情况很差，并且在儿科中，通常依赖于 父母分享医疗信息并做出决定。患有幼年特发性关节炎的父母-青少年二人报告不同 可接受的症状状态阈值和不同的治疗经验，包括依从率和 负面的治疗效果，但尚不清楚这种不一致如何影响随后的偏好、决定、 和结果。迫切需要确定青少年和家长的偏好并将其纳入其中 与幼年特发性关节炎药物和治疗目标相关的决定。因此，该项目的具体目标包括 目标 1：根据患者、家长、 目标 2：比较患者和家长对治疗的偏好以及 JIA 的目标优先事项，以及目标 3：在儿科风湿病诊所的家长和青少年患者中开发和试点测试决策辅助工具 治疗改变时患有 JIA。我将使用名义组技术来识别特征 决策援助将有利于影响护理并促进患者、家长和提供者日常采用 临床工作流程。我将使用离散选择实验和潜在类别分析来识别和量化 患有幼年特发性关节炎的青少年与药物选择和治疗目标相关的偏好和权衡 他们的父母。我将根据之前进行的定性研究开发决策辅助工具，以促进 三元组（青少年、父母和提供者）SDM 用于 JIA 治疗升级并在临床中对该工具进行试点测试 环境。每个目标的结果将有助于该工具的迭代修订，以便针对特定目标进行优化 随后进行更大规模的试验。我的多学科专家指导团队将提供上述方面的指导和培训 偏好方法和 SDM，特别与儿科三元决策相关。在此结论中 项目中，我将获得独特的定位，利用医疗决策方法进行独立研究职业 通过改善患者之间的 SDM 来改善 JIA 患者的生活质量和疾病结果， 父母和提供者。