Exploring Decisional Factors to Include Approaches in a Patient Decision Aid for Juvenile Idiopathic Arthritis Symptom Management

Abstract

Objectives Youth with juvenile idiopathic arthritis (JIA) experience physical and mental health symptoms that negatively impact their participation in daily life activities. The JIA Option Map is a web-based patient decision aid (PDA) created to facilitate decision-making for JIA symptom management. While PDAs should include evidence-based information, the literature does not specify how to decide on the symptom management approaches to include. We aimed to explore factors considered by patient partners and health care providers (HCPs) when choosing new approaches to update the JIA Option Map. Methods Our research team included patient partners and a wide range of HCPs and researchers with expertise in JIA and shared decision making. We conducted individual virtual consultations with research team members to present recent evidence on approaches to managing JIA-related pain, fatigue, and mental health symptoms. Approaches were identified through a scoping review. For each approach, we presented evidence from clinical practice guidelines (CPGs), systematic reviews and clinical trials, along with assessments of their methodological quality. Team members were asked whether each approach should be added to the JIA Option Map, and to rate the level of recommendation based on evidence and expert recommendations (ie, usually, sometimes or not recommended). Results Thirteen team members participated in the consultations (5 patient partners and 8 HCPs), during which we presented evidence on 7 approaches. Most team members agreed that the approaches should be added to the JIA Option Map, with most rated as “sometimes” or “usually” recommended. These included massage for youth and parent anxiety and youth stress, and self-management programs for parent stress and child self-esteem. Three members did not agree to add the following approaches until more information on safety and accessibility was gathered: laser therapy for fatigue and pain, Watsu (Water-Shiatsu) for pain, and video game-based task-oriented activity for pain. Both HCPs and patient partners indicated that they based their decisions primarily on CPG recommendations, personal experience, and evidence on effectiveness, safety and accessibility. Conclusion Overall, most HCPs and patient partners supported adding the proposed approaches to the JIA Option Map based on available evidence. They considered similar factors when making decisions and found accessibility of some approaches to be a limiting factor. Next steps will include gathering additional information on certain approaches to reach consensus on their inclusion and recommendation levels. These findings provide insight into the decision-making process for integrating symptom management approaches into a complex patient decision aid. Supported by a CIORA grant