Barriers to Adherence in Juvenile Idiopathic Arthritis: A Multicenter Collaborative Experience and Preliminary Results

Leslie A Favier, Janalee Taylor, Kristin Loiselle Rich, Karla B Jones, Sheetal S Vora, Julia G Harris, Beth S Gottlieb, Lisa Robbins, Jamie T Lai, Tzielan Lee, Melanie Kohlheim, Jennifer Gill, Laura Bouslaugh, Angela Young, Nancy Griffin, Esi M Morgan, Avani C Modi, Leslie A Favier, Janalee Taylor, Kristin Loiselle Rich, Karla B Jones, Sheetal S Vora, Julia G Harris, Beth S Gottlieb, Lisa Robbins, Jamie T Lai, Tzielan Lee, Melanie Kohlheim, Jennifer Gill, Laura Bouslaugh, Angela Young, Nancy Griffin, Esi M Morgan, Avani C Modi

Abstract

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.

Keywords: JUVENILE ARTHRITIS; PATIENT COMPLIANCE; QUALITY IMPROVEMENT.

Conflict of interest statement

There are no other financial supports or other benefits from commercial sources for the work reported in this manuscript. There are no financial interests or disclosures to report on behalf of any of the listed authors that would create a conflict of interest or the appearance of conflict of interest with regard to the work.

Figures

Figure 1
Figure 1
a and b Frequency of Parental Endorsed Barriers across Treatment Modalities. This bar graph indicates the percentages of adherence barriers endorsed on the barriers assessment tool among parental respondents.
Figure 2
Figure 2
a and b Frequency of Patient Endorsed Barriers across Treatment Modalities. This bar graph indicates the percentages of adherence barriers endorsed on the barriers assessment tool among patient respondents.

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Source: PubMed

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