Self-Reported Barriers to Hemophilia Care in People with Factor VIII Deficiency

Abstract

Background: In 1975, a national network of hemophilia treatment centers (HTCs) was created to increase access to healthcare services for individuals with hemophilia. Studies demonstrate that care in HTCs improves outcomes and reduces costs.Purpose: The objective of the study was to assess the association of demographic, insurance, and clinical characteristics with self-reported barriers to HTC utilization.Methods: Data were collected from six HTCs from 2005 through 2007. Adult participants and parents of children aged Ͻ18 years were interviewed. Barriers were assessed by asking whether it was diffıcult to obtain care in the past 12 months. Chi-square test and logistic regression were used to assess factors associated with self-reported barriers to care. All analyses were performed in 2010 -2011.Results: Data for 327 participants (50% adult, 64% severe hemophilia) were analyzed in 2010 -2011.Most participants/parents did not report barriers to HTC utilization. However, 46 participants/ parents (14%) reported one to six barriers, and 23 reported one barrier. Most frequently reported barriers were "distance to the clinic" for children (44%) and "insurance coverage" for adults (40%). Factors signifıcantly associated with self-reported barriers were: lower income (Ͻ$20,000; ORϭ3.11, 95% CIϭ1.14 -8.45), diffıculty fınding insurance or obtaining full-year coverage (ORϭ5.71, 95% CIϭ2.63-12.41), and decreased state Medicaid coverage for low-income, non-elderly individuals (ORϭ0.93, 95% CIϭ0.89 -0.98).Conclusions: This study indicates that, although few people with hemophilia have barriers to care at HTCs, those with lower income, diffıculty fınding or maintaining adequate insurance coverage, or living in states with lower Medicaid generosity are more likely to report barriers. Identifying and resolving such barriers may improve care access and patient-reported outcomes.

Barriers and perceived limitations to early treatment of hemophilia

“…In the Hemophilia Utilization Group Study part Va (HUGS-Va) that examined the cost and burden of illness in people with hemophilia in the US, three of the most frequently cited barriers for patients in seeking treatment at an HTC were “distance to the center” (30.0%–43.8%), “clinic hours were not convenient” (26.7%–37.5%), and “transportation to center” (20.0%–31.3%) 22. In the HUGS-Va study, the average distance from home to the HTC was 45.2 ± 63.6 miles (72.7 ± 102.4 km).…”

“…Consequently, patients may incur significant out-of-pocket costs, and thus in some instances forgo necessary treatment 23. In the aforementioned HUGS-Va study, 28.3% of patients reported that the primary barrier to their seeking care in an HTC was “insurance does not pay for comprehensive care at HTCs.”22 Recently, there has been a rise in the amount of copayments for families for the clinic visits and factor prescriptions.…”

Insurance, Home Therapy, and Prophylaxis in U.S. Youth with Severe Hemophilia

“…50,51 Monahan et al 52 in this supplement report that among youth with hemophilia, being non-Hispanic black or insured primarily by Medicaid were both independently associated with poorer physical health outcomes and increased school absenteeism as compared to counterparts of other racial/ethnic backgrounds or with other insurance. Barriers to HTC care were reported by Zhou et al 53 in this supplement among patients with lower incomesandinadequatehealthinsurance.Conversely,Hispanics and non-Hispanic blacks with hemophilia achieve high school graduation rates similar to or greater than their U.S. counterparts (i.e., those without hemophilia). 54 Assessing the diffusion of home therapy and prophylaxis across the U.S. is challenging, as is the possible associations of insurance, because of hemophilia's low prevalence and its wide demographic and geographic disbursement.…”

Health – Related Quality of Life Assessment in Filipino Children with Hemophilia Aged 4 To 16 Years in a Tertiary Hospital

“…Studies by Zhou and colleagues, Saxena and Remor, showed that educational barriers (e.g. : lack of awareness regarding signs of bleed, importance of early treatment), financial difficulties (families belonging to the lower income bracket, insurance coverage and costs of treatment), treatment adherence (if on factor prophylaxis), distance from hemophilia treatment center and psychological barriers (denial, fear of pain and injections, risky behavior, parental burden over providing care and discipline) are factors that lowers QoL [20][21][22]. Mehramiri et al presented that socioeconomic factors such as unemployment, low income, occupational problems caused by physical disability, low educational level and Hepatitis C infection were hindrance to the improvement of the QoL of persons with hemophilia [23].…”