Systematized literature review on the effectiveness of self-management programs for juvenile idiopathic arthritis

Self-management skills are critical in chronic diseases such as juvenile idiopathic arthritis (JIA). We conducted a systematized review to synthesize the components and effectiveness of existing self-management programs (SMPs) for adolescents with JIA. Relevant literature was identified from four databases (PsychINFO, CINAHL, Medline (Ovid), and Embase) to February 2024. Inclusion criteria were original, full-text research articles published in the English language which described the components and effectiveness of SMPs conducted in adolescent populations with JIA. A total of 785 articles were reviewed, with 17 meeting the inclusion criteria. In addition to demographic characteristics, we extracted information on the intervention components (theoretical base, facilitator, delivery setting, intervention format, length and duration, activities, parental involvement), outcome scales, and effectiveness outcome measures (e.g., pain reduction, self-efficacy). The components and outcome measures varied between interventions and only four interventions used an RCT design. The majority of interventions consisted of multiple in-person sessions with fourteen of the seventeen studies reporting a sample size of 46 or fewer adolescents. Programs were delivered individually, and facilitated by a healthcare provider, study investigator, or trained coach. Most studies did not describe theoretical foundations. Ten studies demonstrated significant improvements in reported effectiveness measures. Many of the studies with significant findings reported poor intervention adherence and high attrition. A variety of SMPs exist for adolescents with JIA without clear indication of the essential components to yield improved outcomes. The results revealed the need for refining design, evaluation of SMPs, and innovation in in delivery mechanisms.