Shared decision-making aid for juvenile idiopathic arthritis: moving from informative patient education to interactive critical thinking

• Published in: Clinical rheumatology 2019-11, Vol.38 (11), p.3217-3225
• Main Authors: El Miedany, Yasser, El Gaafary, M., Lotfy, H., El Aroussy, N., Mekkawy, D., Nasef, S. I., Farag, Y., Almedany, S., Wassif, Ghada
• Format: Article
• Language: English
• Subjects: Adolescent; Arthritis; Arthritis, Juvenile; Child; Children; Clinical decision making; Clinical outcomes; Critical thinking; Decision making; Decision Making, Shared; Female; Humans; International standards; Male; Medication Adherence - statistics & numerical data; Medicine; Medicine & Public Health; Original Article; Patient compliance; Patient Education as Topic; Patient Reported Outcome Measures; Patients; Rheumatology
• ISSN: 0770-3198; 1434-9949
• DOI: 10.1007/s10067-019-04687-y

Objectives To develop and evaluate an illustrated, stand-alone, interactive evidence-based shared decision making (SDM) aid for JIA children; its ability to produce positive perceived involvement of JIA patients in their own management and its impact on their adherence to therapy, school absenteeism and treatment outcomes. Methods The SDM aid was developed to offer information about the disease, risks and benefits of treatment. A multidisciplinary team defined SDM criteria based on 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. Ninety-four JIA children were provided with the tool, in a randomised controlled study, in comparison to a control group of 95 JIA patients treated according to standard protocols. Results A total of 97.5% of the study children reported comprehensibility of more than 90%. The patients’ adherence to therapy was significantly ( p