Health Related Quality Of Life For Systemic Juvenile Idiopathic Arthritis (SJIA) Patients And Caregivers On Biologic Therapy, From A Caregiver’s Perspective

To evaluate the impact of SJIA on patient and caregiver health related quality of life (HRQoL), from the caregiver’s perspective, based on an international, non-interventional study. This study assessed the physical, mental and stress impact associated with SJIA on the caregiver and patient, from the caregiver’s perspective, using the following validated outcome measures; Child Health Questionnaire Parent-Form 50 (CHQ-PF50) for the child and 36-Item Short-Form Health Survey (SF-36v2) for the caregiver. The physical and mental component scores were compared to US population norms. Eligible patients had received biologic treatment for ≥2 months. Sixty-one biologic treated children were included. The mean (±SD: standard deviation) CHQ PF-50 physical (PhS) and psychosocial (PsS) summary scores in children with SJIA compared to the US normative population were significantly lower, by a large (>0.8 SD) and moderately large (>0.5 SD) effect size, (PhS: 40.0±18.2 vs. 53.0±8.8; PsS: 46.6±11.3 vs. 51.2±9.1), respectively. Caregivers displayed a mean SF-36v2 physical component score higher than a normative US population, although their mean mental component score was significantly lower than the US normative population, by a small effect size (>0.3 SD), (MCS 46.2±10.7 vs. 50.0+10). The most frequent and high cause of stress for SJIA caregivers were: ‘worry about the long-term impact of their child’s SJIA’ (45%); ‘uncertainty about the future of their child, family and themselves, due to their child’s SJIA' (28%); ‘uncertainty about their child’s ability to become fully independent as an adult’ (27%) and ‘feeling helpless about their child’s SJIA’ (24%). SJIA has a significant impact on both the child and caregivers’ HRQoL. SJIA patients’ physical HRQoL was severely impaired and their psychosocial health impaired to a small degree. Caregivers were physically healthy but displayed mental HRQoL impairment.