Research Suggests Racial Disparities in Hemophilia-Related Distress Scores

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New research presented at ASH 2022 and conducted following a Hemophilia-Related Distress Questionnaire indicated racial disparities between White and Black patients.

A recent study presented at the American Society of Hematology (ASH) Annual Meeting and Exposition indicated that higher hemophilia-related distress scores were reported by Black patients than White patients.

The study was conducted to assess the impacts of race and ethnicity for patients with hemophilia. The research was led by Stacey Fedewa, PhD, MPH, from the Department of Hematology and Medical Oncology at Emory University’s School of Medicine.

“Hemophilia-related distress has been shown to be higher among people with less education and those who were unemployed,” Fedewa and colleagues wrote. “However, differences in hemophilia-related distress according to race/ethnicity have not been previously described but are important to explore to identify potential health inequities.”


This study happened as a result of the Hemophilia-Related Distress Questionnaire (HRDq) that had been given, from which the results found education and employment to be strongly-related to distress related to hemophilia.

In the new study, investigators used the HRDq to then conduct a cross-sectional study recruiting 143 patients with hemophilia A or B from 1 of 2 possible centers, during the period of July of 2017 and December of 2019.

HRDQ scores were used to assess higher rates of hemophilia-related distress, with the total maximum summary score being 120. Participants self-reported their race, with the 3 groups being White (non-Hispanic), Hispanic, and Black. Comparisons were made between participants’ total HRDq and domain-specific scores with ANOVA and independent T tests.

The participants were about 82.5% male, with 89.5% reporting having hemophilia A. Age of participants was 36.7 on average, and the participants were 72% White, 17.5% black, and about 9% Hispanic.


The study results indicated that average HRDq score was significantly higher among Black (mean=42.6 SD=20.6; p-value=.038) participants compared to White (mean=33.2, SD=14.9) participants. The research team’s findings indicated that both financial struggles and daily function distress scores were found to be higher among Black patients than White patients.

The range of HRDq scores went from 2 to 83, and had a mean of 35.1 SD= 16.5 and a median of 31. The investigators did not find differences between Hispanic patients (mean=33.8, SD=16.7, P=.89) and White patients.

“Differences in household income mediated higher distress scores in Black compared to White participants, highlighting the critical need to better understand the impact of social determinants of health in persons with hemophilia,” they wrote. “Further research on how racial/ethnic differences in hemophilia-related distress influence disease self-management and outcomes are needed.”

This study, “Racial/Ethnic Disparities in Hemophilia-Related Distress,” was presented at ASH 2022.