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

点击翻译按钮获取中文摘要

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.