Author(s)
Shenoi S1, Horneff G2, Cidon M3, Ramanan A4, Kimura Y5, Quartier P6, Foeldvari I7, Zeft A8, Lomax K9, Gregson J10, Mckenna SJ11, Abma T12, Campbell S13, Weiss J14, Marinsek N15, Patel D13, Wulffraat N16
1Seattle Children’s Hospital, Seattle, WA, USA, 2Asklepios Kliniken, Sankt Augustin, Germany, 3Stanford University, Palo Alto, CA, USA, 4University Hospital Bristol, Bristol, UK, 5Hackensack University Medical Center, NJ, NJ, USA, 6Hôpital Necker, Paris, France, 7Hamburger Zentrum für Kinder- und Jugendrheumatologie, Hamburg, Germany, 8Pediatrics Rheumatology, Cleveland Clinic, Cleveland, OH, USA, 9Novartis Pharmaceuticals Corporation, East Hanover, NJ, USA, 10Novartis Pharma AG, Basel, Switzerland, 11Novartis Business Services, Dublin, Ireland, 12VU University medical center, Amsterdam, The Netherlands, 13Navigant Consulting, Inc., London, UK, 14Navigant Consulting Inc, London, UK, 15Navigant Consulting, London, UK, 16Wilhelmina Kinderziekenhuis, Utrecht, The Netherlands
OBJECTIVES: To evaluate the impact of SJIA on the caregiver’s work productivity and the child’s schooling. METHODS: As part of an international study to assess the burden of SJIA on the caregiver and patient, from a caregiver’s perspective, caregiver’s work productivity (using the work productivity and activity impairment questionnaire (WPAI) and impact on patients schooling (using tailored questions) were assessed. Caregivers indicated change in work commitments due to their child’s SJIA and how frequently it caused them to miss work or for their child or siblings to miss school. 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. 77% of caregivers were employed (full or part time), however 36% had reduced their number of working hours or stopped working due to their child’s SJIA. SJIA related appointments were the main cause of a caregiver missing work, in the past two months (57%). Employed caregivers had missed a mean 2.8 hours of work in the past seven days due to their child’s SJIA, equating to approximately 25 working days annually. Caregiver’s mean absenteeism score based on WPAI, was 10% and mean presenteeism score (reduced on-the-job effectiveness) was 11%, equivalent to a productivity loss of 27.5 work days. In the two months prior to survey completion, a mean 2.9 school days were missed by patients due to their SJIA. Assuming a 5-day school week and 36 school weeks per year, this equated to 10% yearly schooling loss. SJIA caused patients’ siblings to miss a mean 0.3 days of school in the past two months. CONCLUSIONS: SJIA families experience reduced school and work productivity. There is a need for effective therapeutic interventions which are not burdensome and limit disruption on SJIA families’ lives.
Conference/Value in Health Info
2017-11, ISPOR Europe 2017, Glasgow, Scotland
Value in Health, Vol. 20, No. 9 (October 2017)
Code
PSY94
Topic
Economic Evaluation, Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes, Work & Home Productivity - Indirect Costs
Disease
Musculoskeletal Disorders, Rare and Orphan Diseases