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.

项目总结/摘要 这个为期5年的K23提案的总体目标是支持Melissa Mannion，MD，MSPH成为一个 独立研究者使用医疗决策方法来评估和改善个性化治疗 为每一位幼年特发性关节炎（JIA）患者提供治疗决策。JIA是最常见的风湿性疾病， 是一种终身的慢性疾病，需要长期治疗，以防止疼痛，身体的损失， 功能和永久性损伤。虽然有关于初始治疗的建议，当这是 无效，次佳选择不太明确，并且可能受到患者，父母和提供者偏好的影响。 由于这种不确定性和治疗方案的各种属性， 建议用于治疗决策，可以减少决策冲突，提高对护理的满意度， 提高生活质量。SDM在常规临床护理中的结合很差，在儿科中，通常依赖于 父母分享医疗信息并做出决定。JIA的父母-青少年对报告不同 可接受的症状状态阈值和不同的治疗经验，包括依从率， 负面的治疗效果，但不知道这种不一致如何影响随后的偏好，决定， 和结果。有一个关键的需要，以确定和纳入青少年和家长的喜好， 与JIA药物和治疗目标相关的决策。因此，本项目的具体目标包括： 目的1：根据患者、父母、 目标2：比较患者和父母对JIA治疗和目标优先级的偏好， 3：在儿科风湿病诊所为家长和青少年患者开发并试点测试决策辅助工具 在治疗变更时与JIA进行比较。我将使用名词组技术来识别 决策辅助工具，将对护理产生有利影响，并促进患者、父母和提供者在日常生活中采用 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 与JIA青少年的药物选择和治疗目标相关的偏好和权衡， 他们的父母我将根据以前进行的定性研究开发一个决策辅助工具， 三位一体（青少年、父母和提供者）SDM用于JIA的治疗升级，并在临床中对该工具进行试点测试 设置.每个目标的结果将有助于工具的迭代修订，以便它将针对 更大的审判。我的专家多学科指导团队将提供指导和培训， 偏好方法和SDM，特别是与儿科三元决策相关的。在这一结论 项目，我将独特的定位为一个独立的研究生涯使用医疗决策方法， 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， 父母和供应商。