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. 2018:2:1.
doi: 10.1186/s41687-017-0025-2. Epub 2018 Jan 4.

Adding patient-reported outcomes to a multisite registry to quantify quality of life and experiences of disease and treatment for youth with juvenile idiopathic arthritis

Elissa R Weitzman  1   2   3 , Lauren E Wisk  1   2 , Parissa K Salimian  4 , Kara M Magane  1 , Fatma Dedeoglu  5 , Aimee O Hersh  6 , Yukiko Kimura  7 , Kenneth D Mandl  2   3   8 , Sarah Ringold  9 , Marc Natter  2   3
Affiliations

Adding patient-reported outcomes to a multisite registry to quantify quality of life and experiences of disease and treatment for youth with juvenile idiopathic arthritis

Elissa R Weitzman et al. J Patient Rep Outcomes. 2018.

Abstract

Background: Children with Juvenile Idiopathic Arthritis (JIA) often have poor health-related quality of life (HRQOL) despite advances in treatment. Patient-centered research may shed light on how patient experiences of treatment and disease contribute to HRQOL, pinpointing directions for improving care and enhancing outcomes.

Methods: Parent proxies of youth enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry shared patient-reported outcomes about their child's HRQOL and experiences of disease and treatment burden (pain interference, morning stiffness, history of medication side effects and methotrexate intolerance). Contributions of these measures to HRQOL were estimated using generalized estimating equations accounting for site and patient demographics.

Results: Patients (N = 180) were 81.1% white non-Hispanic and 76.7% female. Mean age was 11.8 (SD = 3.6) years, mean disease duration was 7.7 years (SD = 3.5). Mean Total Pediatric Quality of Life was 76.7 (SD = 18.2). Mean pain interference score was 50.1 (SD = 11.1). Nearly one-in-five (17.8%) youth experienced >15 min of morning stiffness on a typical day, more than one quarter (26.7%) reported ≥1 serious medication side effect and among 90 methotrexate users, 42.2% met criteria for methotrexate intolerance. Measures of disease and treatment burden were independently negatively associated with HRQOL (all p-values <0.01). Negative associations among measures of treatment burden and HRQOL were attenuated after controlling for disease burden and clinical characteristics but remained significant.

Conclusions: For youth with JIA, HRQOL is multidimensional, reflecting disease as well as treatment factors. Adverse treatment experiences undermine HRQOL even after accounting for disease symptoms and disease activity and should be assessed routinely to improve wellbeing.

Keywords: Adolescents; Children; Chronic illness; Disease burden; Health-related quality of life; Juvenile idiopathic arthritis; Patient reported outcomes; Treatment burden.

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Conflict of interest statement

Ethics approval and consent to participate

The Institutional Review Boards of each of the four participating sites (Boston Children’s Hospital, Seattle Children’s Hospital, Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center, and University of Utah/Primary Children’s Hospital) approved the study. Written informed consent/assent was obtained from all parent/child participants included in the study.

Consent for publication

Not applicable

Competing interests

The authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
Parents’ top concerns regarding their child’s treatment. Parents (N=180) were asked to rank the primary and secondary issues that concerned them most about their child’s treatment. The percentages of parents who endorsed each concern as the primary or secondary concern are presented
See this image and copyright information in PMC

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