PRM94 - Quality of Life of Adults with a History of Juvenile Idiopathic Arthritis: A Systematic Review

Abstract

Juvenile idiopathic arthritis (JIA) is a rheumatologic disease affecting 1 in 1,000 children resulting in life-long disability. New treatments for JIA have the potential to alter disease course. However, a challenge in economic evaluations of JIA drug treatment is to obtain quality of life (QoL) data, by JIA subtype, related to the transition of care from childhood to adulthood to inform life-time horizon cost effectiveness models. Our objective is to conduct a systematic review to identity QoL of adults with JIA. MEDLINE and EMBASE databases were searched. Studies in English that collected primary data evaluating QoL in adults with a history of JIA were included. Abstracts and full-text were screened independently by 2 reviewers. Data extracted included publication year, QoL instrument, QoL results, and sample size. We identified 1031 articles, and included 15 published between 1997-2017. Fourteen unique questionnaires were completed by 4023 individuals. QoL instruments included 3 generic multi-dimensional, 6 generic uni-dimensional (dimensions: pain, fatigue, well-being, vision, coping), 2 disease-specific multi-dimensional, and 2 generic multi-dimensional utility-based instruments. The most commonly used were the Health Assessment Questionnaire (n=10 studies), and SF-36 (n=9). Disease-specific instruments were Childhood Health Assessment Questionnaire (n=2), and Arthritis Impact Measurement Scale (n=1). Two studies reported EQ5D index scores: 0.902 (range:0.03-1; using German value set), and 0.8 (range:0.1-1; value set undefined). There was significant variability in reporting of QoL results, even within instrument. Few studies reporting utility data were identified, and utilities were not stratified by disease status or subtype. Data reported are not sufficient to inform life-time horizon models. Generic QoL instruments were used more often than disease-specific instruments. The heterogeneity in reporting QoL results highlights the need for standardization. It remains a need for rigorous QoL assessment during and after the transition of care to inform economic evaluations of early interventions.