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Published in: Pediatric Rheumatology 1/2021

Open Access 01-12-2021 | Juvenile Rheumatoid Arthritis | Research article

Monitoring patients with juvenile idiopathic arthritis using health-related quality of life

Authors: Martijn J. H. Doeleman, Sytze de Roock, Nathan Buijsse, Mark Klein, Gouke J. Bonsel, Vicki Seyfert-Margolis, Joost F. Swart, Nico M. Wulffraat

Published in: Pediatric Rheumatology | Issue 1/2021

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Abstract

Background

Pediatric patients with juvenile idiopathic arthritis (JIA) are at risk for a lower health-related quality of life compared to their healthy peers. Remote monitoring of health-related quality of life using electronic patient-reported outcomes could provide important information to treating physicians. The aim of this study was to investigate if self-assessment with the EuroQol five-dimensional ‘youth’ questionnaire with five levels (EQ-5D-Y-5 L) inside a mobile E-health application could identify JIA patients in need of possible treatment adjustments.

Methods

The EQ-5D-Y-5 L was completed via a mobile application (Reuma2Go) between October 2017 and January 2019. The clinical juvenile arthritis disease activity score with 71 joint count (cJADAS-71) was reported at every corresponding visit as reference for disease activity. Previously described cJADAS-71 thresholds were used to identify patients in possible need of treatment adjustments. Discriminatory power of the EQ-5D-Y-5 L was assessed by ROC-curves and diagnostic characteristics.

Results

Sixty-eight JIA patients completed the EQ-5D-Y-5 L questionnaire. Median cJADAS-71 indicated low disease activity overall in the studied population. ROC curves and diagnostic characteristics demonstrated that self-assessment with the EQ-5D-Y-5 L could distinguish between patients with inactive disease (or minimal disease activity) and moderate to high disease activity with good accuracy (87%), sensitivity (85%), specificity (89%) and negative predictive value (86%).

Conclusions

Results demonstrate that the EQ-5D-Y-5 L was able to identify JIA patients in need of possible treatment adjustments in our studied population. Remote monitoring of health-related quality of life and patient-reported outcomes via E-health applications could provide important additional information to determine the frequency of clinical visits, assess therapeutic efficacy and guide treat-to-target strategies in pediatric patients with JIA.
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Metadata
Title
Monitoring patients with juvenile idiopathic arthritis using health-related quality of life
Authors
Martijn J. H. Doeleman
Sytze de Roock
Nathan Buijsse
Mark Klein
Gouke J. Bonsel
Vicki Seyfert-Margolis
Joost F. Swart
Nico M. Wulffraat
Publication date
01-12-2021
Publisher
BioMed Central
Published in
Pediatric Rheumatology / Issue 1/2021
Electronic ISSN: 1546-0096
DOI
https://doi.org/10.1186/s12969-021-00527-z

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