Monitoring patients with juvenile idiopathic arthritis using health-related quality of life
Doeleman, Martijn J.H.; de Roock, Sytze; Buijsse, Nathan; Klein, Mark; Bonsel, Gouke J.; Seyfert-Margolis, Vicki; Swart, Joost F.; Wulffraat, Nico M.
(2021) Pediatric Rheumatology, volume 19, issue 1, pp.
(Article)
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
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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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Keywords: Adolescent, Arthritis, Juvenile/diagnosis, Child, Diagnostic Self Evaluation, Female, Humans, Male, Mobile Applications, Monitoring, Ambulatory/methods, Quality of Life, Retrospective Studies, Journal Article
ISSN: 1546-0096
Publisher: BioMed Central
Note: Funding Information: The EQ-5D-Y-5?L is a copyrighted instrument, which can be obtained from the EuroQol Research Foundation by registering at their website www.euroqol.org. No license fee will be charged for non-commercial use. Reuma2Go is a copyrighted mobile application and accompanying web-based portal was built on the MyOwnMed, Inc., platform (Bethesda, USA) MyOwnMed, Inc. Funding Information: This work was supported by longstanding research support from the Dutch Arthritis Foundation (ReumaNederland), grant number LLP10. Publisher Copyright: © 2021, The Author(s).
(Peer reviewed)