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

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

doi:10.1186/s12969-021-00527-z

Abstract

BackgroundPediatric 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.MethodsThe 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.ResultsSixty-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%).ConclusionsResults 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.

Highlights

Pediatric patients with juvenile idiopathic arthritis (JIA) are at risk for a lower health-related quality of life compared to their healthy peers
In order to facilitate remote monitoring and frequent self-assessment of Patient-reported Outcome (PRO), we have recently developed a mobile E-health application, called “Reuma2Go”
Since current treat-to-target guidelines recommend incorporation of PROs and health-related quality of life (HRQoL) in patient assessment and therapeutic decisions [17], the present study aimed to investigate if remote selfassessment with the EQ-5D-Y-5L could identify JIA patients in need of possible treatment adjustments

Summary

Introduction

Pediatric patients with juvenile idiopathic arthritis (JIA) are at risk for a lower health-related quality of life compared to their healthy peers. Patients with JIA are still at risk for a significantly worse health-related quality of life (HRQoL) when compared to their healthy peers [1,2,3,4]. Persisting pain and fatigue, recurrent disease activity, and impaired societal participation remain issues for many patients with JIA [5,6,7]. This emphasizes the importance of adequately monitoring HRQoL. Frequent application required for detailed monitoring can be difficult, especially with pediatric patients

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