Methods: SJIA treatment centers in France, Germany, Netherlands, UK and the US participated. Pts (aged 4-18 years) with confirmed SJIA received one of the following biologic treatments for ≥2 months: anakinra (ANA), canakinumab (CAN), or tocilizumab (TOC). SJIA burden in patients on biologics was assessed 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 utilization questions.

Results: Sixty-one pts enrolled from June 2015- June 2016: 12 on ANA, 25 on CAN, 24 on TOC; 46% from the US; 48% female; mean age at survey was 11.3 years. Mean age at SJIA diagnosis was 6.4 years, mean age at start of ANA, CAN, and TOC treatment was 9.9, 9.1, and 7.5 years, respectively. Caregivers were 79% female, mean age 41.2 years, and 36% reduced or stopped working due to their child’s SJIA. Of the pts enrolled on CAN and TOC, 72% and 46% respectively had previously been on ANA. Baseline CHAQ, CHQ-PF50, and WPAI scores were worse in CAN and TOC than ANA pts. Mean (±SD) 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 (46.2±10.7 vs. 50.0+10). Highest caregiver stressors were worry over long-term SJIA impact on their child (45%) and uncertainty about the future (28%).

Conclusion: Treatment sequencing and patient-reported outcome measures indicate ANA is used as 1^st line for less severe SJIA while CAN and TOC are used as 2^nd/3^rd line for severe SJIA. Caregivers expressed stress over the long-term impact of SJIA and fear for the future and had variable treatment satisfaction and resource utilization levels.