Favier LA, Taylor J, Rich KL, et al. Barriers to Adherence in Juvenile Idiopathic Arthritis: A Multicenter Collaborative Experience and Preliminary Results. J Rheumatol. 2018;45:690-696. DOI: 10.3899/jrheum.171087.
Little is known about barriers to treatment nonadherence for youth with juvenile idiopathic arthritis (JIA). Collaborators from the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN; a multi-center quality improvement collaborative network) developed a Barriers Assessment Tool with 17 questions spanning 4 treatment domains - oral medications, injections, infusions, and physical/occupational therapy. The majority (70%) of patients and 77% of parents/caregivers identified at least 1 barrier: pain, forgetting, side effects, worry about future treatment consequences, and embarrassment were the barriers most commonly identified.
The Barriers Assessment Tool is based on the principle that nonadherence is a modifiable factor that affects morbidity, mortality, healthcare decision-making, health-related quality of life, and healthcare costs. At the 7 participating hospitals, the researchers used a coproduction approach: patients’ families were involved from the beginning through the completion of the study, along with pediatric rheumatologists, nurse practitioners, and psychologists. Of 1148 eligible patients, 677 barrier assessments were conducted (59% completion rate). There was high agreement in patient-caregiver dyads on the number and type of barriers present. This is a potentially impactful study because a tool for assessing barriers to treatment adherence in JIA has now been developed and implemented. This permits future studies identifying patients/families at high risk of nonadherence, and potentially identifying targets for interventions to improve treatment adherence. Improved adherence (whether medications that are given parenterally and/or taken orally) can help patients have better quality of life and minimize the chance of long-term damage to joints among youth with JIA.