RT Journal Article
SR Electronic
T1 Barriers to Adherence in Juvenile Idiopathic Arthritis: A Multicenter Collaborative Experience and Preliminary Results
JF The Journal of Rheumatology
JO J Rheumatol
FD The Journal of Rheumatology
SP 690
OP 696
DO 10.3899/jrheum.171087
VO 45
IS 5
A1 Leslie A. Favier
A1 Janalee Taylor
A1 Kristin Loiselle Rich
A1 Karla B. Jones
A1 Sheetal S. Vora
A1 Julia G. Harris
A1 Beth S. Gottlieb
A1 Lisa Robbins
A1 Jamie T. Lai
A1 Tzielan Lee
A1 Melanie Kohlheim
A1 Jennifer Gill
A1 Laura Bouslaugh
A1 Angela Young
A1 Nancy Griffin
A1 Esi M. Morgan
A1 Avani C. Modi
YR 2018
UL http://www.jrheum.org/content/45/5/690.abstract
AB Objective. Nonadherence is currently an underrecognized and potentially modifiable obstacle to care in juvenile idiopathic arthritis (JIA). The purpose of our study was to design and implement a standardized approach to identifying adherence barriers for youth with JIA across 7 pediatric rheumatology clinics through the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) and to assess the frequency of adherence barriers in patients and their caregivers across treatment modalities.Methods. An iterative process using coproduction among parents and providers of patients with JIA was used to design the Barriers Assessment Tool to screen for adherence barriers across 4 treatment modalities (i.e., oral medications, injectable medications, infusions, and physical/occupational therapy). This tool was implemented in 7 rheumatology clinics across the United States and patient responses were collected for analysis.Results. Data were collected from 578 parents and 99 patients (n = 44 parent-child dyads). Seventy-seven percent (n = 444) of caregivers and 70% (n = 69) of patients reported at least 1 adherence barrier across all treatment components. The most commonly reported adherence barriers included worry about future consequences of therapy, pain, forgetting, side effects, and embarrassment related to the therapy. There was no significant difference between endorsement of barriers between parents and adolescents.Conclusion. Implementing a standardized tool assessing adherence barriers in the JIA population across multiple clinical settings is feasible. Systematic screening sheds light on the factors that make adherence difficult in JIA and identifies targets for future adherence interventions in clinical practice.