Measuring Barriers to Care for Children with Juvenile Idiopathic Arthritis

June 19, 2018

Article Citation

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.

First Dose

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.

Key Points to Remember

Click for Larger ImageThe 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.

Link to Research Article 

Summary Author

Kaveh Ardalan, MD

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