The financial burden of juvenile idiopathic arthritis: a Nova Scotia experience

Abstract

BackgroundJuvenile idiopathic arthritis (JIA) is the most common childhood rheumatic illness. There is little published data on the financial burden of this illness. The primary objective of this study was to determine the annual costs borne by families of a child with JIA living in Nova Scotia (NS).MethodsAll families in NS with a child followed in the Pediatric Rheumatology Clinic at the Izaak Walton Killam Health Centre (IWK) in 2009 were mailed a self-report questionnaire. The questionnaire evaluated disease related costs, gross household income and perceived financial burden. Dillman's method was used to optimize return rates. Descriptive statistics were used to summarize results. Spearman’s correlation coefficient was used to assess the relationship of distance from the IWK and cost. The Mann–Whitney U test was used to compare median costs between groups.ResultsOf 172 possible respondents, we received 54 completed questionnaires and 11 blank questionnaires (overall response rate 31.4%). Approximately one third (35.9%) of parents rated the financial burden as moderate or large and 36% rated financial resources available as poor. The median annual total cost per patient was $619.50 CAD (range 0, $5535) which was a median 0.7% (range 0, 37%) of gross household incomes. The largest expense for families was visit related costs. There was not a significant relationship between total annual costs and distance from the IWK (rs = 0.18, P = 0.2). Families of a child with oligoarthritis had significantly lower costs than the families of a child with another subtype of JIA ($359.00 CAD vs. $877.00 CAD, P = 0.02).ConclusionsThe costs associated with having a child with JIA in NS are on average modest, but may be considerable for some families. Oligoarticular JIA is associated with smaller costs. Many families perceive the burden to be at least moderate and the availability of financial resources to be poor. Supports should be targeted to those families most in need.

Decreasing patient cost and travel time through pediatric rheumatology telemedicine visits

“…This is in stark contrast to our cohort where 64 % of respondents reported missing work to attend their child’s appointment. A Nova Scotia study evaluated both patient costs as well as perceived financial burden of JIA for families [ 26 ]. Non-medical costs, specifically costs associated with visits to the tertiary care center where the rheumatology clinic was located, composed 31 % of the total costs.…”

Seeking the state of the art in standardized measurement of health care resource use and costs in juvenile idiopathic arthritis: a scoping review

“…vitamins, minerals, herbal medicine)8[35, 38, 41, 42, 46–49] Folic acid3[47–49] Other, or not specified7[35, 38, 41, 42, 46–48]Drug administration costs6[32, 37, 39, 47–49] Administering joint injections (incl. appointment and/or anaesthesia)4[37, 39, 47, 48] Intravenous infusion (including bags and solutions)3[32, 37, 49] Other injections, which may include monitoring (by nurse/caregiver), and which may include training and/or caregiver time3[32, 39, 49] Other, or not specified1[49]Overhead/fixed resources1[38]Out-of-pocket patient/family costsTransportation costs10[9, 33, 34, 36, 37, 39, 41, 42, 44, 50] Transportation, non-medical (including toll)7[9, 33, 34, 37, 39, 41, 42] Transportation, medical5[9, 34, 37, 39, 42] Other, or not specified3[36, 44, 50](Other) out-of-pocket costs9[33, …”

“…appointment and/or anaesthesia)4[37, 39, 47, 48] Intravenous infusion (including bags and solutions)3[32, 37, 49] Other injections, which may include monitoring (by nurse/caregiver), and which may include training and/or caregiver time3[32, 39, 49] Other, or not specified1[49]Overhead/fixed resources1[38]Out-of-pocket patient/family costsTransportation costs10[9, 33, 34, 36, 37, 39, 41, 42, 44, 50] Transportation, non-medical (including toll)7[9, 33, 34, 37, 39, 41, 42] Transportation, medical5[9, 34, 37, 39, 42] Other, or not specified3[36, 44, 50](Other) out-of-pocket costs9[33, 35, 37, 39–42, 44, 50]* Home adaptations and special equipment (toilet seat appliance, bathtub or shower appliance, stair lift)5[33, 37, 41, 42, 50] Childcare for babysitting, also for other children (during medical visits/hospitalization of diseased child)4[33, 37, 42, 50] Caregivers’ accommodations (e.g. when child is hospitalized/receives injection)4[33, 37, …”

“…Although 4 articles included or mentioned adverse events, side effects and/or complications due to the disease and/or treatment [32, 36, 40, 50], these were not included as a separate category as these involve hospital visits, treatment, and other items already included in Table 2. Similarly, costs of JIA over the long term were included or mentioned in 8 articles [32, 34, 36, 37, 40, 47–49], but (whenever possible) the accompanying resource use items (e.g. surgery and treatment) were captured in the other items.…”

“…pharmacist)Assumption / not specifiedNot costedMedical costsMedication16 [9, 32–34, 36–44, 47–49]8 [9, 32, 33, 36, 40, 41, 43, 49]8 [9, 32, 34, 38, 42, 44, 47, 48]1 [38]2 [33, 37]1 [39]Outpatient and inpatient hospital visits15 [9, 32–34, 36–42, 44, 47–49]6 [9, 32–34, 41, 42]10 [32, 34, 36, 38, 40–42, 47–49]5 [38, 39, 44, 47, 48]2 [33, 37]Medical professional visits and care13 [9, 32, 34, 36–38, 40–42, 44, 47–49]9 [9, 32, 34, 36, 41, 42, 47–49]8 [9, 32, 34, 38, 40, 41, 47…”