Association of social demographics and clinical factors with barriers to hemophilia care in patients with factor viii deficiency-The hemophilia utilization group study-part v

Background: In 1975 a partnership among clinicians, consumers and government agencies created a nationwide regional healthcare delivery system that increased access to clinical care and prevention services for individuals with hemophilia, a costly, rare, inherited chronic disorder that has significant physical, social, and financial consequences. Published studies demonstrate that this specialized team based system of care improves outcomes and reduces catastrophic costs associated with treating the disorder. Purpose: One goal of the hemophilia utilization group study (HUGS) is to assess patients' access to these specialized services and to identify specific barriers to access. We examined the association of modifiable and non-modifiable factors such as social demographics, insurance, and clinical factors with self-reported barriers to hemophilia care. Methods: Data were derived from the standardized interview from the HUGS-V observational cohort of 311 patients (51% adult and 61% with severe hemophilia) receiving care in one of five different states. The patients' perceptions of overall access to care were assessed from a single question: "In the past 12 months, has there ever been a time that you needed hemophilia care but it was difficult to get it?" Eleven specific barriers were assessed for those reporting difficulty receiving care. Chi-square tests and logistic regressions with stepwise selection were used to assess the association of demographics, insurance, and clinical factors with self-reported barriers to care. Results: Mean age was 9.8 years (children) and 34.9 (adult). Forty-six (14.2%) patients reported one to six barriers to hemophilia care. Of those with barriers, the most frequently reported barriers were "distance to the clinic" (40.5%) for both adults and children, "insurance coverage" for adults (32%), and "clinic schedule not convenient" for children (42%) and adults (28%). Other barriers cited were transportation to the center, lost pay, and unspecified barriers (29%). Patients who had family income less than $20,000 were more likely to report having barriers to care than those who had income at, or above $20,000 (P=0.04). Hemophilia severity was not associated with barriers to care. Logistic regression analysis indicate 1) lower income ($20,000) (OR=4.1, CI: 1.8, 9.0) was significantly associated with self-reported barriers to care; 2) there were regional differences in barriers care (P=0.03). Conclusion: Preliminary data indicate that lower income, location of the hemophilia treatment center, and lack of insurance are significantly associated with barriers to care. Identifying barriers to care is the first step in targeting interventions in order to increase access and potentially improve outcomes.