A crucial need exists for improved understanding of the effect of social determinants of health (SDoH) and financial hardships among individuals with hemophilia, according to findings from a cross-sectional study published in the Journal of Racial and Ethnic Health Disparities.

Although the presence of hemophilia-related distress (HRD) appears to be higher in individuals with a lower level of educational achievement, possible racial and ethnic differences remain to be elucidated. It is well known that the disease-associated challenges faced by individuals with hemophilia, such as the stress and fatigue linked to their physical limitations, can be further exacerbated across systemic socioeconomic factors.

The current study is a planned secondary analysis of data from the Hemophilia-Related Distress Questionnaire (HRDq) validation study. The study was designed to better understand HRD, which may signal issues that potentially can be tackled by the healthcare team of an individual with hemophilia.

Continue Reading

Having insight into racial/ethnic differences in distress is critical, based on the fact that distress has been associated with worse outcomes and suboptimal disease management in patients with chronic diseases. In particular, among patients with hemophilia, distress has been related to poor adherence to prophylactic therapies, as well as to work impairments.

Learn more about HCP resources for hemophilia

The study enrolled adults 18 years of age or older with hemophilia A or B. Participants were recruited from 1 of 2 hemophilia centers in the United States between July 2017 and December 2019. Persons with hemophilia with a baseline factor level of 0% to 50% were enrolled in the study.

The primary study outcome was HRD, which was calculated with a validated HRDq that included 24 questions in 4 different domains:

  1. Hemophilia management
  2. Financial concerns
  3. Perceived self-efficacy
  4. Daily function

Six possible responses for all questions were available. Note that for questions related to the “perceived self-efficacy domain,” the points assigned were reversed (ie, “never” was assigned “5 points” and “always” was assigned
“0 points”). Total HRDq scores ranged from 0 to 120, with higher scores indicative of increased hemophilia-associated distress.

  • Never: 0 points
  • A little bit: 1 point
  • Sometimes: 2 points
  • Often: 3 points
  • Most of the time: 4 points
  • Always: 5 points

Self-reported race/ethnicity was grouped as follows:

  • Hispanic: approximately 9.1% of participants
  • Non-Hispanic White: approximately 72.0% of participants
  • Non-Hispanic Black: approximately 17.5% of participants
  • Asian: approximately 1.4% of participants (not considered in analyses)

One hundred forty-three individuals completed the HRDq and were enrolled in the study. Overall, 82.5% of the participants were male and 89.5% had hemophilia A.

Read more about epidemiology in hemophilia

Study results revealed that average HRDq scores were significantly higher for non-Hispanic Black participants (mean, 42.6±20.6; P =.038) and similar among Hispanic patients (mean, 33.8±16.7; P =.89), compared with non-Hispanic White participants (mean, 33.2±14.9).

Per multivariable analysis, differences between non-Hispanic Black and non-Hispanic White participants endured following adjustments for disease severity, inhibitor status, and target joint. Following adjustment for household income, however, differences in HRDq were no longer significant (P =.10).

“Household income mediated higher distress scores in non-Hispanic Black compared with non-Hispanic White participants, highlighting the urgent need to understand social determinants of health and financial hardship in persons with hemophilia,” the researchers concluded.


Fedewa SA, Buckner TW, Parks SG, et al. Racial and ethnic differences in distress, depression, and quality of life in people with hemophilia. J Racial Ethn Health Disparities. Published online May 3, 2023. doi:10.1007/s40615-023- 01616-3