Paediatric Rheumatology
The burden of systemic juvenile idiopathic arthritis for patients and caregivers: an international survey and retrospective chart review
S. Shenoi1, G. Horneff2, M. Cidon3, A.V. Ramanan4, Y. Kimura5, P. Quartier6, I. Foeldvari7, A. Zeft8, K.G. Lomax9, J. Gregson10, T. Abma11, S. Campbell-Hill12, J. Weiss13, D. Patel14, N. Marinsek15, N. Wulffraat16
- Seattle Children’s Hospital and Research Center and University of Washington, Seattle, WA, USA. susan.shenoi@seattlechildrens.org
- Centre of General Paediatrics and Neonatology, Asklepios Clinic Sankt Augustin, Sankt Augustin; and Department of Pediatric and Adolescents Medicine, Medical Faculty, University Hospital of Cologne, Germany.
- Pediatric Rheumatology, Stanford University, CA, USA.
- Paediatric rheumatology, University Hospitals Bristol, University of Bristol, UK.
- Pediatric Rheumatology, Hackensack University Medical Center, NJ, USA.
- Paris-Descartes University, IMAGINE Institute, Necker-Enfants Malades Hospital, Assistance Publique Hôpitaux de Paris, France.
- Hamburger Zentrum für Kinder-und Jugend Rheumatologie, Hamburg, Germany.
- Pediatric Rheumatology, Cleveland Clinic, USA.
- Novartis Pharmaceuticals Corporation, New Jersey, USA.
- Novartis Pharma AG
- VU University Medical Centre, Amsterdam, the Netherlands.
- Navigant Consulting, Inc., USA.
- Navigant Consulting, Inc., USA.
- Navigant Consulting, Inc., USA.
- Navigant Consulting, Inc., USA.
- Kinderreumatologie, Wilhelmina Kinderziekenhuis, University Medical Centre Utrecht, the Netherlands.
CER10714
2018 Vol.36, N°5
PI 0920, PF 0928
Paediatric Rheumatology
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PMID: 29600940 [PubMed]
Received: 27/07/2017
Accepted : 04/12/2017
In Press: 21/03/2018
Published: 26/09/2018
Abstract
OBJECTIVES:
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.
CONCLUSIONS:
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.