Share Decision Making Aid for Juvenile Idiopathic Arthritis: Moving from Informative Patient Education to Interactive Critical Thinking

Abstract

Background: Shared decision making (SDM) is an emerging trend in paediatrics. Currently available SDM interventions are mere information on the disease or medication and often fail to engage the children in the medical decision process. It has been suggested that future decision aids should endorse better children engagement. Objectives: To develop, and evaluate an illustrated and interactive evidence-based SDM aid for JIA children, 2. 2.Positive perceived involvement of JIA patients in their own management that would be reflected on treatment outcomes. Methods: A multidisciplinary team defined SDM criteria based on the international standards (IPDAS). Eight categories emerged as highly important for SDM. Each category was supported by simple illustrations in an interactive style. At the end of each category the child is asked to make a decision in view of the information given. 94 JIA children evaluated the tool, in a randomized controlled study, in comparison to control group of 95 JIA patients treated according to standard protocols. Results: The SDM aid was developed to offer information about the disease, risks and benefits of treatment.97.5% of the children included reported comprehensibility of > 90/100. The patients' adherence to therapy was significantly (p<0.01) higher in the SDM group, whereas stopping DMARDs for intolerability, was significantly higher in the control group at 12-months of treatment. There was significant improvement in the patient reported outcomes in the SDM group, whilst absence from school was significantly higher in the control group (p< 0.01) Conclusions: This Illustrated-interactive SDM aid for JIA children was found to be a simple, user-friendly tool which can be implemented in standard practice. The developed SDM offered the children evidence-based information about the pros and cons of treatment options, improved their understanding of the disease, communication with their treating clinician and their ability to make an informed decision. Funding Statement: Authors declare none. Declaration of Interests: Nothing to declare. Ethics Approval Statement: Local ethical and methodological protocols for approval of the study were followed. All patients or their parents/ caregivers who participated in the study signed an informed consent according to the declaration of Helsinki.