Exploring Training Needs to Facilitate Shared Decision Making in Juvenile Idiopathic Arthritis Symptom Management and the Use of the JIA Option Map

Abstract

Objectives Our team developed the JIA Option Map, a web-based patient decision aid (PDA) designed to support shared decision-making (SDM) for juvenile idiopathic arthritis (JIA) symptom management. Since training for health care providers (HCP) can enhance SDM and the use of PDAs, we aimed to explore training needs to support SDM in JIA symptom management and the implementation of the JIA Option Map. Methods We used a qualitative descriptive study design and conducted virtual semi-structured interviews with young people aged 10 years and older with JIA, their caregivers, and HCPs (target: up to 15 per group). Interview guides, informed by the Interprofessional SDM (IP-SDM) model, explored participants’ experiences with SDM, as well as perceived barriers, facilitators, and training needs for HCPs to use SDM and the JIA Option Map. Interviews were video-recorded, transcribed verbatim, and analyzed using inductive and deductive content analysis guided by the IP-SDM model. Results To date, HCPs described providing varying levels of information about treatment options and their benefits and risks, depending on their team roles (eg, treatment vs referral), but they rarely mentioned scientific evidence. While some HCPs reported considering patients’ values and preferences, young people felt that final decisions were often left to them without enough guidance to reflect on their values. They expressed a desire for HCPs to better explain available options and clarify what matters most to patients. Reported barriers to SDM included limited time, power imbalances between HCPs and young people, and limited access to evidence-based information tools. Facilitators included access to tools such as the JIA Option Map and training in decision coaching to help HCPs support patients in a non-directive way. Participants recommended virtual, self-paced training modules featuring real-world clinical cases to demonstrate SDM and integration of the JIA Option Map. They also suggested that all HCPs at a given site receive SDM training to support interprofessional SDM. Conclusion Preliminary findings highlight the need for HCPs to provide evidence-based information on JIA symptom management options to help patients articulate their values and preferences. Participants identified a need for practical SDM training, including guidance on using the JIA Option Map. Additional interviews will further clarify training needs to facilitate SDM in JIA symptom management. Supported by a CIORA grant