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.

Background:In recent years, juvenile idiopathic arthritis (JIA) research has shifted towards treat-to-target therapy based on clinical assessments and patient-reported outcomes (1). A well-known measurement of quality of life is the EQ-5D-5L (2). Herewith, we report preliminary results of a retrospective study using the child-friendly ‘EQ-5D-5L-Y’ with an E-health application (Reuma2GO) to monitor children with JIA in an outpatient setting.Objectives:To assess the relationship between dimensions of the health-related quality of life ‘EQ-5D-5L-Y’ questionnaire and conventional assessments for children with JIA, including the Juvenile Arthritis Multidimensional Assessment Report (JAMAR) and active joint count (AJC), and to investigate the potential of the EQ-5D-5L-Y as instrument for outpatient management.Methods:The study was designed as monocentric retrospective cohort study. Data from October 2017 to January 2019 were available for 70 patients with JIA. The relationships between individual dimensions of the EQ-5D-5L-Y, JAMAR and several clinical assessments were investigated. Furthermore, dimensions of the EQ-5D-5L-Y were investigated as possible predictors for binary disease activity using AJC > 0 as reference standard for active disease.Results:Seventy patients with JIA completed 115 EQ-5D-5L-Y and JAMAR questionnaires within two weeks before a clinical visit. Moderate to high correlations were found between the EQ-5D-5L-Y and JAMAR. Moreover, the best possible EQ-5D-5L-Y score, with and without health-related visual analogue scale (EQ-VAS), demonstrated high sensitivity (81.1%) and negative predictive value (84.8%) for active disease (Table 1). The few patients who were incorrectly classified as having inactive disease (false-negatives) did not have their medication changed at the clinical visit and experienced little to no impact of disease activity on their quality of life, as indicated by the JAMAR questionnaire.Table 1Predictive value of EQ-5D-5L-Y dimensions for active disease using AJC > 0 as reference standard.Cut-off for ‘Active Disease’Accuracy (%, CI)SensitivitySpecificityPPVNPVEQ-5D Mobility > 174.8% (65.8-82.4)59.5%82.1%61.1%81.0%EQ-5D Self-Care > 176.5% (67.7-83.9)35.1%96.2%81.2%75.8%EQ-5D Usual Activities > 167.8% (58.5-76.2)73.0%65.4%50.0%83.6%EQ-5D Pain/Discomfort > 162.6% (53.1-71.5)62.2%62.8%44.2%77.8%EQ-5D Anxiety/Depression > 173.9% (64.9-81.7)51.4%84.6%61.3%78.6%EQ-5D EQ-VAS <8560.0% (50.4-69.0)64.9%57.7%42.1%77.6%EQ-5D Total Score > 560.0% (50.4-69.0)81.1%50.0%43.5%84.8%EQ-5D Score > 5 & EQ-VAS <8552.2% (42.7-61.6)83.8%37.2%38.8%82.9%PPV: positive predictive value; NPV: negative predictive value.Conclusion:These results demonstrate the discriminatory value of the EQ-5D-5L-Y between active and inactive disease in our cohort of patients with JIA. High negative predictive value was found for the total EQ-5D-5L-Y score, with and without EQ-VAS. In conclusion, the EQ-5D-5L-Y could be a valuable instrument for monitoring children with JIA in an outpatient setting which could aid physicians with...