Stopping Medicines for Inactive Juvenile Idiopathic Arthritis: What Do Patients and Families Consider?
DanielB. Horton1,2, JomairaSalas3, AleksandraWec4, TimBeukelman5, AlexisD. Boneparth6, Jaime Guzman7, KyHaverkamp8, MelanieKohlheim9, MelissaL. Mannion5, LakshmiN. Moorthy1, Elizabeth Stringer10, Lori Tucker7, SarahRingold11, MarshaRosenthal2
1Rutgers Robert Wood Johnson Medical School, New Brunswick, NJ, USA
2Rutgers Institute for Health, Health Care Policy and Aging Research, New Brunswick, NJ, USA
3Department of Sociology, Rutgers, the State University, New Brunswick, NJ, USA
4Mathematica Policy Research, Princeton, NJ, USA
5University of Alabama at Birmingham, Birmingham, AL, USA
6Columbia University Medical Center, New York, NY, USA
7British Columbia Children’s Hospital, University of British Columbia, Vancouver, BC, Canada
8University of Washington School of Medicine,Seattle, WA, USA
9Pediatric Rheumatology Care and Outcomes Improvement Network, Cincinnati, OH, USA
10IWK Health Centre, Dalhousie University, Halifax, NS, Canada
11Seattle Children's Hospital, Seattle, WA, USA
Background: Prior research has examined factors important to clinicians in deciding whether to withdraw therapy for inactive JIA, but few studies have investigated what is important to patients with JIA and their families. Recently, we interviewedpatients and their caregivers about stopping JIA medications. One of the major themes to emerge was the perceived trade-off between risks and fears of medicines and risks and fears of the disease itself. This trade-off was influenced strongly by negative prior experiences and complications of JIA or its treatment as well as perceived threats of long-term damage.We administered an anonymous online survey to learn how widespread these beliefs and actions are.
Methods: We recruited participants via social media, email, and paper advertisements in pediatric rheumatology clinics in the US and Canada, in collaboration with PARTNERS (Patient, Advocates, and Rheumatology Teams NEtwork for Research and Service). The online survey was administered via REDCap hosted at Rutgers University and was available in English and Spanish. The format and questions of the survey were based on the findings from semi-structured interviewsexploringdecision-making around withdrawing JIA treatment. Questions were refined with additional input from patients and parents who pilot tested the survey. Participant enrollment will conclude in February 2018.
Results: To date, 130 participants have completed the online survey, including 108 parents, 17 young adults, and 5 adolescents. Participants reported living in the USA (103, 82%), Canada (16, 12%), or other countries (8, 6%). Participants were asked to rate and rank a number of disease- and treatment-related factors that may influence decisions to stop JIA treatment, such as JIA-related damage, duration of inactive disease, concerns about flare, concerns about drug side effects or long-term effects, and cost or inconvenience of medicines.Other questions were designed to judge how reluctant or eager individuals were to stop their (or their children's)medicines, particularly in cases of disagreement with the treating clinician. Background questions asked for demographic information andtheir (or their children’s) history of JIA and medication use.
Conclusion: This online survey will provide important new information about the factors of greatest importance for patients with JIA and their families in making decisions about treatment withdrawal. It will help us better understand how people balance the trade-off between risks and fears of medicines and risks and fears of having JIA. Greater awareness of this trade-off and related influential factors may help improve shared decision-making around withdrawing treatment for inactive JIA.
Ethics Approval
The study was approved by the Rutgers University Institutional Review Board, protocol number Pro20160000193.
Funding
Funding for this work came from a CARRA-AF Small Grant.