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Abstract Number: 52

How Young People with Juvenile Idiopathic Arthritis and Their Caregivers Weigh the Risks of the Disease and its Treatment: A Mixed-Methods Study

Daniel B. Horton1,2, Jomaira Salas3, Aleksandra Wec4, Timothy Beukelman5,6, Alexis Boneparth1, Ky Haverkamp7, Melanie Kohlheim8, Melissa Mannion5, Nandini Moorthy1, Sarah Ringold9 and Marsha Rosenthal2, 1Pediatrics, Rutgers Robert Wood Johnson Medical School, New Brunswick, NJ, 2Rutgers Institute for Health, Health Care Policy and Aging Research, New Brunswick, NJ, 3Department of Sociology, Rutgers, the State University of New Jersey, New Brunswick, NJ, 4Rutgers, the State University of New Jersey, New Brunswick, NJ, 5Pediatrics, University of Alabama at Birmingham, Birmingham, AL, 6Pediatric Rheumatology, University of Alabama at Birmingham, Birmingham, AL, 7Family Medicine, University of Washington School of Medicine, Seattle, WA, 8Pediatric Rheumatology Care and Outcomes Improvement Network, Cincinnati, OH, 9Seattle Children's Hospital, Seattle, WA

Meeting: 2017 Pediatric Rheumatology Symposium

Keywords: juvenile idiopathic arthritis (JIA), medication, qualitative and remission

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Session Information

Date: Thursday, May 18, 2017

Session Title: Clinical and Therapeutic Poster Session

Session Type: Abstract Submissions

Session Time: 5:30PM-7:00PM

Background/Purpose: Prior research has examined factors important to clinicians in deciding whether to withdraw therapy for inactive JIA, but little is known about the perspectives of patients and families confronted with these decisions. We studied how patients with JIA and caregivers consider whether to continue or stop treatment for well-controlled JIA.

Methods: We conducted semi-structured telephone interviews of patients with JIA (age 13 years and older) and caregivers of children with JIA in the US. Participants were purposively chosen among those who completed a preliminary online survey about demographics and medical history. Interviews included questions about experiences with JIA, medicines for JIA, and factors that influenced decision-making around treatment for active and inactive disease. Interviews were transcribed and independently coded by two researchers; coding was reviewed for consistency and accuracy by two other investigators. Another investigator conducted data triangulation for corroboration. Thematic analysis drew upon the common-sense model of self-regulation to categorize and compare emergent themes.

Results: We interviewed a diverse group of 20 patients (10 age under 18) and 24 caregivers (11 parents of children age under 11) (Table). Key themes revolved around perceived risks, fears, and threats. These concerns applied both to having JIA on the one hand and to taking medicines on the other hand: symptoms versus side effects; long-term damage (existing or feared); interference in school, work, and activities by disease, infusions, or side effects; and emotional burdens and behavioral problems from having JIA versus taking medicines. How participants balanced these competing risks related to past and ongoing experiences as well as concerns about long-term effects, the latter mainly among parents and adults with JIA. Coping strategies, disease state and duration, uncertainty and unpredictability, and trust in the rheumatology team were key modifying factors.

Conclusion: For patients and parents, decisions around withdrawing JIA medicines revolve around a trade-off between risks and fears of medicines and risks and fears of the disease itself. Balancing these risks and fears is influenced strongly by negative prior experiences and complications of JIA or its treatment as well as perceived threats of long-term damage. Clinicians’ awareness of this trade-off may help improve shared decision-making around withdrawing treatment for inactive JIA.

Table. Characteristics of interview participants

Self-reported characteristics

N (%)

Demographics and geography

Group

  Patient, Ages 13-17 years old

10 (23%)

  Patient, Ages 18 and older (range 18-38)

10 (23%)

  Parent, Child 10 and younger

11 (25%)

  Parent, Child older than 10

13 (30%)

Patient sex, female

35 (80%)

Latino ethnicity

10 (23%)

Non-white race

6 (14%)

Public insurance

10 (23%)

Maximum level of education of parent

  High school

4 (9%)

  College

21 (47%)

  Graduate school

19 (43%)

Region of US

  Midwest

9 (20%)

  Northeast

8 (18%)

  South

19 (43%)

  West

8 (18%)

Disease and medication experience

JIA category

  Oligoarticular JIA

11 (25%)

  Polyarticular JIA

18 (41%)

  Psoriatic JIA

4 (9%)

  Enthesitis-related arthritis

5 (11%)

  Systemic JIA

5 (11%)

  Other

1 (2%)

Uveitis

9 (20%)

Methotrexate use

  None

7 (16%)

  Prior

17 (39%)

  Current

20 (45%)

Biologic use

  None

7 (16%)

  Prior

5 (11%)

  Current

32 (73%)

History of inactive JIA and treatment discontinuation

  Never inactive

10 (23%)

  Never stopped, inactive before

2 (5%)

  Never stopped, inactive now

11 (25%)

  Stopped, now active

12 (27%)

  Stopped, now inactive

9 (20%)


Disclosure: D. B. Horton, None; J. Salas, None; A. Wec, None; T. Beukelman, None; A. Boneparth, None; K. Haverkamp, None; M. Kohlheim, None; M. Mannion, None; N. Moorthy, None; S. Ringold, None; M. Rosenthal, None.

To cite this abstract in AMA style:

Horton DB, Salas J, Wec A, Beukelman T, Boneparth A, Haverkamp K, Kohlheim M, Mannion M, Moorthy N, Ringold S, Rosenthal M. How Young People with Juvenile Idiopathic Arthritis and Their Caregivers Weigh the Risks of the Disease and its Treatment: A Mixed-Methods Study [abstract]. Arthritis Rheumatol. 2017; 69 (suppl 4). https://acrabstracts.org/abstract/how-young-people-with-juvenile-idiopathic-arthritis-and-their-caregivers-weigh-the-risks-of-the-disease-and-its-treatment-a-mixed-methods-study/. Accessed January 16, 2021.
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