The burden of systemic juvenile idiopathic arthritis for patients and caregivers: An international survey and retrospective chart review

Susan Shenoi, Gerd Horneff, Michal Cidon, Athimalaipet V. Ramanan, Yukiko Kimura, Pierre Quartier, Ivan Foeldvari, Andrew Zeft, Kathleen G. Lomax, Jill Gregson, Tineke Abma, Sarah Campbell-Hill, Jeffrey Weiss, Dony Patel, Nina Marinsek, Nico Wulffraat

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>Objective To investigate the burden of systemic juvenile idiopathic arthritis (SJIA) on health-related quality of life (HRQOL) and resource use of patients and caregivers (families) on biologic therapy. Methods This international study assessed SJIA burden in patients on biologics, using a caregiver questionnaire and retrospective chart review. Validated measures included: Child Health Questionnaire Parent-Form 50 (CHQ-PF50), 36-Item Short-Form Health Survey (SF-36v2) and Work Productivity and Activity Impairment questionnaire: Specific Health Problem (WPAI:SHP). Caregivers completed function, treatment satisfaction and resource utilisation questions. Results Sixty-one biologic treated patients participated (12 anakinra, 25 canakinumab, 24 tocilizumab). Mean age at diagnosis and survey completion was 6.4 and 11.3 years, respectively. Mean (±SD: standard deviation) CHQ-PF50 physical (PhS) and psychosocial (PsS) summary scores were significantly lower in SJIA patients than a normative population (PhS: 40.0±18.2 vs. 53.0±8.8; PsS: 46.6±11.3 vs. 51.2±9.1) as was caregivers'mean SF-36v2 mental component score (MCS; 46.2±10.7 vs. 50.0±10). Assistive devices were required by 54%; 20% required home/car alterations. According to caregivers, biologic treatment completely improved SJIA symptoms in 48% on canakinumab or tocilizumab and 32% on anakinra. Over 2 months, patients missed 2.9 school days due to SJIA (10% yearly loss). Caregivers lost 25 work days annually and 27.5 days of productivity (WPAI-SHP: mean absenteeism 10%; presenteeism 11%). Yearly SJIA travel/treatment costs averaged $1,130. Conclusion SJIA patients on biologic therapy experience HRQOL impairment, caregivers'mental well-being suffers and productivity losses and expenses are incurred. Therapeutic interventions that reduce the burden of SJIA are required.
Original languageEnglish
Pages (from-to)920-928
JournalClinical and Experimental Rheumatology
Issue number5
Publication statusPublished - 2018

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