Arthritis & Rheumatism, Volume 62,
November 2010 Abstract Supplement
Abstracts of the American College of
Rheumatology/Association of Rheumatology Health Professionals
Annual Scientific Meeting
Atlanta, Georgia November 6-11, 2010.
The Financial Burden of Juvenile Idiopathic Arthritis.
Ens2, Andrea, Lang1, Bianca A., Ramsey1, Suzanne E., Stringer2, Elizabeth, Huber1, Adam M.
Very little is known about the financial burden of Juvenile Idiopathic Arthritis (JIA), particularly the burden borne by families in Canada. There are considerable medical and non-medical costs related to having JIA that families are expected to pay, in order for their children to receive the standard of care. The primary objective of this study was to determine the annual medical and related non-medical out-of-pocket costs associated with having a child who has JIA borne by families in Nova Scotia (NS).
All families in NS with a child followed by the Pediatric Rheumatology Clinic at the IWK Health Centre in 2008, with JIA as per the International League of Associations for Rheumatology criteria, were mailed a self-report, parental questionnaire. Families were excluded if there was more than 1 child with JIA, or if there were other chronic illnesses. The questionnaires evaluated medical and non-medical related out-of-pocket costs, as well as gross household income. Dilman's method was used to optimize return rates. One hundred and seventy-three questionnaires were mailed out. Of these, 5 were returned unopened due to incorrect addresses, giving a potential total of 168. Fifty-five (32.7%) were returned completed, and another 11 (6.5%) were returned blank or called to decline participation, for a total return rate of 39.3%.
The majority of questionnaires were completed by the child's mother (81.8%). The mean age of the children was 13.1y (range 5, 20) and 60% were female. The mean household income was $78,850 (median $70,000, range $2,500, $175,000). On average, families lived 116km (median 34.5km, range 4.5km, 530km) from the pediatric rheumatology clinic. The financial burden was rated as large by 1.9%, moderate by 35.2%, minimal by 44.4% and nothing by 18.5%. Resources available to help with the costs were rated as either fair or poor by 54.9% of parents. The mean total annual cost per patient was $1,281.71 (median $641.50, range 0, $12,556) which was on average 2.9% (median 0.9%, range 0, 46%) of their household income. The mean annual medication cost was $357.86 (median 0, range 0, $10,000). The annual mean visit costs for appointments with physicians or related allied health care workers was $276.89 (median $45, range 0, $2,286), and the annual mean non-medication cost was $80.64 (median $0, range 0, $1,850). Non-medication costs included the cost of physiotherapy, assistive aids, and home adaptations. The mean loss of paid work per year was $348.36 (median $0, range 0, $2,600). The Pearson correlation for total costs per year and distance was 0.46 (P=0.0005) and for annual visit costs for appointments and distance was 0.68 (P=0.0000), demonstrating a moderate direct relationship between distance and costs.
The financial burden associated with having a child with JIA in NS is considerable, particularly for some families. The impact of this burden on outcomes is unknown and warrants further evaluation.
To cite this abstract, please use the following information:
Ens, Andrea, Lang, Bianca A., Ramsey, Suzanne E., Stringer, Elizabeth, Huber, Adam M.; The Financial Burden of Juvenile Idiopathic Arthritis. [abstract]. Arthritis Rheum 2010;62 Suppl 10 :238