Leslie A Favier1,2, Janalee Taylor3,4, Kristin Loiselle Rich3,4, Karla B Jones3,4, Sheetal S Vora3,4, Julia G Harris3,4, Beth S Gottlieb3,4, Lisa Robbins3,4, Jamie T Lai3,4, Tzielan Lee3,4, Melanie Kohlheim3,4, Jennifer Gill3,4, Laura Bouslaugh3,4, Angela Young3,4, Nancy Griffin3,4, Esi M Morgan3,4, Avani C Modi3,4. 1. From the Division of Rheumatology, and Division of Behavioral and Clinical Psychology, and the James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center; University of Cincinnati, Cincinnati, Ohio; Division of Rheumatology, Nationwide Children's Hospital, Columbus, Ohio; Division of Rheumatology, Levine Children's Hospital, Charlotte, North Carolina; Division of Rheumatology, Children's Mercy Hospital, Kansas City, Missouri; Division of Rheumatology, Cohen Children's Medical Center, New York, New York; Division of Rheumatology, Penn State Children's Hospital, Hershey, Pennsylvania; Division of Rheumatology, Stanford Children's Hospital, Palo Alto, California; The Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN), Cincinnati, Ohio, USA. Leslie.Favier@cchmc.org. 2. L.A. Favier, MD, Division of Rheumatology, and the Division of Behavioral and Clinical Psychology, Cincinnati Children's Hospital Medical Center, and the University of Cincinnati; J. Taylor, MSN, APRN, CNP, Division of Rheumatology, Cincinnati Children's Hospital Medical Center; K. Loiselle Rich, PhD, Division of Behavioral and Clinical Psychology, Cincinnati Children's Hospital Medical Center, and University of Cincinnati; K.B. Jones, APRN, Division of Rheumatology, Nationwide Children's Hospital; S.S. Vora, MD, Division of Rheumatology, Levine Children's Hospital; J.G. Harris, MD, Division of Rheumatology, Children's Mercy Hospital; B.S. Gottlieb, MD, MS, Division of Rheumatology, Cohen Children's Medical Center; L. Robbins, BSN, CPN, Division of Rheumatology, Penn State Children's Hospital; J.T. Lai, MD, Division of Rheumatology, Stanford Children's Hospital; T. Lee, MD, Division of Rheumatology, Stanford Children's Hospital; M. Kohlheim, Parent Representative, PR-COIN; J. Gill, LSW, Parent Representative, PR-COIN; L. Bouslaugh, Parent Representative, PR-COIN; A. Young, Parent Representative, PR-COIN; N. Griffin, BSN, MPA, PR-COIN, and the James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center; E.M. Morgan, MD, MSCE, Division of Rheumatology, Cincinnati Children's Hospital Medical Center, and PR-COIN, and James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center; A.C. Modi, PhD, Division of Behavioral and Clinical Psychology, Cincinnati Children's Hospital Medical Center, and University of Cincinnati. Leslie.Favier@cchmc.org. 3. From the Division of Rheumatology, and Division of Behavioral and Clinical Psychology, and the James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center; University of Cincinnati, Cincinnati, Ohio; Division of Rheumatology, Nationwide Children's Hospital, Columbus, Ohio; Division of Rheumatology, Levine Children's Hospital, Charlotte, North Carolina; Division of Rheumatology, Children's Mercy Hospital, Kansas City, Missouri; Division of Rheumatology, Cohen Children's Medical Center, New York, New York; Division of Rheumatology, Penn State Children's Hospital, Hershey, Pennsylvania; Division of Rheumatology, Stanford Children's Hospital, Palo Alto, California; The Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN), Cincinnati, Ohio, USA. 4. L.A. Favier, MD, Division of Rheumatology, and the Division of Behavioral and Clinical Psychology, Cincinnati Children's Hospital Medical Center, and the University of Cincinnati; J. Taylor, MSN, APRN, CNP, Division of Rheumatology, Cincinnati Children's Hospital Medical Center; K. Loiselle Rich, PhD, Division of Behavioral and Clinical Psychology, Cincinnati Children's Hospital Medical Center, and University of Cincinnati; K.B. Jones, APRN, Division of Rheumatology, Nationwide Children's Hospital; S.S. Vora, MD, Division of Rheumatology, Levine Children's Hospital; J.G. Harris, MD, Division of Rheumatology, Children's Mercy Hospital; B.S. Gottlieb, MD, MS, Division of Rheumatology, Cohen Children's Medical Center; L. Robbins, BSN, CPN, Division of Rheumatology, Penn State Children's Hospital; J.T. Lai, MD, Division of Rheumatology, Stanford Children's Hospital; T. Lee, MD, Division of Rheumatology, Stanford Children's Hospital; M. Kohlheim, Parent Representative, PR-COIN; J. Gill, LSW, Parent Representative, PR-COIN; L. Bouslaugh, Parent Representative, PR-COIN; A. Young, Parent Representative, PR-COIN; N. Griffin, BSN, MPA, PR-COIN, and the James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center; E.M. Morgan, MD, MSCE, Division of Rheumatology, Cincinnati Children's Hospital Medical Center, and PR-COIN, and James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center; A.C. Modi, PhD, Division of Behavioral and Clinical Psychology, Cincinnati Children's Hospital Medical Center, and University of Cincinnati.
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.
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.
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