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Abstract Number: 69

The Disease Burden of Systemic Juvenile Idiopathic Arthritis for Patients and Caregivers: An International Health Related Quality of Life Survey and Retrospective Chart Review

Susan Shenoi1, Gerd Horneff2, Michal Cidon3, Athimalaipet Ramanan4, Yukiko Kimura5, Pierre Quartier6, Ivan Foeldvari7, Andrew Zeft8, Kathleen G Lomax9, Jill Gregson10, Abma Tineke11, Sarah Campbell12, Jeffrey Weiss12, Dony Patel12 and Nico Wulffraat13, 1Pediatric Rheumatology, Children's Hospital Seattle, Seattle, WA, 2Department of Pediatrics, Asklepios Clinics St. Augustin, Sankt Augustin, Germany, 3Stanford University, Palo Alto, CA, 4University Hospitals Bristol, Bristol, United Kingdom, 5Hackensack University Medical Center, Hackensack, NJ, 6Necker-Enfants Malades Hospital, Paris, France, 7Kinder- und Jugenrheumatologie, Hamburger Zentrum Kinder-und Jugendrheumatologie, Hamburg, Germany, 8Pediatrics Rheumatology, Cleveland Clinic, Cleveland, OH, 9Novartis Pharmaceuticals Corporation, East Hanover, NJ, 10Novartis Pharma AG, Basel, Switzerland, 11VU University medical center, Amsterdam, Netherlands, 12Navigant Consulting, Inc., London, United Kingdom, 13Wilhelmina Kinderziekenhuis, Utrecht, Netherlands

Meeting: 2017 Pediatric Rheumatology Symposium

Keywords: Canakinumab and caregivers

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Session Information

Date: Thursday, May 18, 2017

Session Title: Clinical and Therapeutic Poster Session

Session Type: Abstract Submissions

Session Time: 5:30PM-7:00PM

Background/Purpose: Systemic juvenile idiopathic arthritis (SJIA) is a severe autoinflammatory disease characterized by systemic features including high fevers, rash and arthritis. SJIA can impose high physical, psychosocial, behavioral and financial burden on patients (pts) and their families. The objective was to analyze the impact of the burden of SJIA by evaluating caregiver perspectives of disease burden in an international, real-world study.

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 1st line for less severe SJIA while CAN and TOC are used as 2nd/3rd 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.


Disclosure: S. Shenoi, None; G. Horneff, 2; M. Cidon, None; A. Ramanan, None; Y. Kimura, 2,9; P. Quartier, 2,5,8; I. Foeldvari, 8; A. Zeft, 1,5; K. G. Lomax, 3; J. Gregson, 3; A. Tineke, None; S. Campbell, 5; J. Weiss, 5; D. Patel, 5; N. Wulffraat, 2,5.

To cite this abstract in AMA style:

Shenoi S, Horneff G, Cidon M, Ramanan A, Kimura Y, Quartier P, Foeldvari I, Zeft A, Lomax KG, Gregson J, Tineke A, Campbell S, Weiss J, Patel D, Wulffraat N. The Disease Burden of Systemic Juvenile Idiopathic Arthritis for Patients and Caregivers: An International Health Related Quality of Life Survey and Retrospective Chart Review [abstract]. Arthritis Rheumatol. 2017; 69 (suppl 4). https://acrabstracts.org/abstract/the-disease-burden-of-systemic-juvenile-idiopathic-arthritis-for-patients-and-caregivers-an-international-health-related-quality-of-life-survey-and-retrospective-chart-review-2/. Accessed May 19, 2022.
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