Background: Families of children with Osteogenesis Imperfecta (OI) make costly modifications to their home, lifestyle and employment and incur costs of rehabilitative, preventative and adaptive care for their child. While parents have readily identified that these costs are financially burdensome, the degree of financial burden has not yet been described in families of children with OI.
Objectives: To evaluate the out of pocket, OI related expenses (ExpOI) incurred by families of children with OI. In addition we aimed to evaluate whether there is any association of ExpOI with the perceived impact on the family of caring for a child with OI on the family.
Methods: We undertook a cross-sectional study using self-report questionnaires from families of children with OI followed at SickKids Hospital, Toronto, Canada. Data collected included clinical variables and out of pocket OI related expenses (using modified Expenditures for Health and Social Service utilization questionnaire created by Browne et al.). Families also completed the Impact of Family Scale; a validated instrument which measures the impact of chronic health conditions on families.
Results: Of 34 respondents (childs mean age 8.1±4.6 years, 70% female), 38% identified the severity of their childs OI as mild, 38% moderate and 24% severe. The % of net income spent on ExpOI was 10.0±17.4% with 29.6% of families experiencing financial burden as defined as spending over 10% of their net income on ExpOI. Financially burdened families had greater costs associated with hospital visits (P=0.019), bisphosphonate treatments (P=0.013) and allied health visits (P=0.045). In looking at the impact of OI on the family, higher impact was associated with greater severity of OI, bisphosphonate use, surgery in the previous year, longer travel time to the hospital and increased ExpOI. On multi-regression analysis, greater OI severity, ExpOI and having had a surgical intervention in the preceding year were the greatest predictors of burden experienced by the family unit (R2=0.623.)
Conclusion: Even in Canada, with access to a universal healthcare system, 29.6% of families affected by OI experience financial burden. The results of this study further suggest that the financial cost of caring for a child with OI is a significant contributor to the overall impact the condition has on families.
Disclosure: The authors declared no competing interests.