Racial and Ethnic Differences in Distress, Depression, and Quality of Life in people with hemophilia

Hemophilia-related distress (HRD) has been shown to be higher among those with lower educational attainment, but potential racial/ethnic differences have not been previously described. Thus, we examined HRD according to race/ethnicity. This cross-sectional study was a planned secondary analysis of the hemophilia-related distress questionnaire (HRDq) validation study data. Adults aged ≥ 18 years with Hemophilia A or B were recruited from one of two hemophilia treatment centers between July 2017-December 2019. HRDq scores can range from 0–120, and higher scores indicate higher distress. Self-reported race/ethnicity was grouped as Hispanic, non-Hispanic White (NHW) and non-Hispanic Black (NHB). Unadjusted and multivariable linear regression models were used to examine mediators of race/ethnicity and HRDq scores. Among 149 participants enrolled, 143 completed the HRDq and were included in analyses. Approximately 17.5% of participants were NHB, 9.1% were Hispanic and 72.0% were NHW. HRDq scores ranged from 2 to 83, with a mean of 35.1 [standard deviation (SD) = 16.5]. Average HRDq scores were significantly higher among NHB participants (mean = 42.6,SD = 20.6; p-value = .038) and similar in Hispanic participants (mean = 33.8,SD = 16.7, p-value = .89) compared to NHW (mean = 33.2,SD = 14.9) participants. In multivariable models, differences between NHB vs NHW participants persisted when adjusting for inhibitor status, severity, and target joint. However, after household income was adjusted for, differences in HRDq scores were no longer statistically significant (β = 6.0 SD = 3.7; p-value = .10). NHB participants reported higher HRD than NHW participants. Household income mediated higher distress scores in NHB compared to NHW participants, highlighting the urgent need to understand social determinants of health and financial hardship in persons with hemophilia.