Presentation Details
| The relationship between different pain measures, depression, and social support and race and ethnicity in persons with hemophilia. Maria E Santaella, Matthew Hartnett, Luke Luckey, Cynthia D Nichols. National Bleeding Disorders Foundation, New York, NY, USA |
Abstract
Background Community Voices in Research (CVR), a community-powered registry supported by the National Bleeding Disorders Foundation, collects information directly from persons with inheritable bleeding disorders (BDs) and their immediate family members with the goal of understanding their lived experience and identifying relevant research questions. Disparities in healthcare and health outcomes within minoritized and marginalized populations have been extensively documented in the literature. Addressing these potential differences necessitates that they first be defined and characterized. However, despite growing evidence that race/ethnicity may have a negative impact, few studies in BDs account for these variables when analyzing results. Objectives This analysis describes the relationship between age, birth sex, pain intensity, impact, and interference; depression, and social support and race/ethnicity in people with hemophilia A and B participating in CVR. Methods Data were collected 2019-2022. Self-reported measures used included PROMIS Pain Intensity 3a v2.0, Pain Interference 4a v1.1, and depression 8b v1.0; ASCQ-Me Pain Impact SF; and Duke-UNC Functional Support Questionnaire (FSSQ) (7 item version). Missing data were pairwise excluded to permit use of partial surveys. The 2-sample t-test with unequal variances and Pearson r (Bonferroni-adjusted) were used for analysis. Black/Indigenous/People of Color (BIPOC) included those with ≥1 race or ethnicity self-identified as Hispanic/Latino (105/30.8%), Black/African American (31/9.3%), Asian (15/4.5%), American Indian/Alaska Native (10/3.0%), South Asian (5/1.5%), Native Hawaiian/Pacific Islander (1/0.3%), or Middle Eastern (0). Relationship status was defined as whether or not the respondent was married or in a long-term relationship. P values <0.05 stand as statistically significant. Results Adult respondents with hemophilia A or B who disclosed race and/or ethnicity were included (n=341). Social support did not differ significantly by age, race/ethnicity, or relationship status, but was higher in males vs. females (28.5 vs. 26.7, p=0.036). All pain and depression measures were inversely correlated with social support (ranging from -0.30 to -0.57, p<0.001). Pain measures were positively correlated with depression score (correlations ranged from 0.50-0.62, p<0.001). Depression had a weak inverse correlation with age (r=-0.190, p=0.009); age was not significantly correlated with any of the pain measures. Age was lower in Black/African American (35.7 vs. 41.0, p=0.025) and Hispanic (37.5 vs. 42.1, p<0.001) respondents. When combined and compared to White/Caucasian non-Hispanic (WCnH), BIPOC respondents had higher scores for depression scores and all pain measures (Table 1). Ethnicity (Hispanic/Latino compared to non-Hispanic/Latino) demonstrated a similar pattern (Table 2). Those with Hispanic/Latino ethnicity who were born in the US had lower social support scores as well as higher pain interference, pain impact, and depression scores compared to those born outside of the US (Table 3). Conclusion When compared to WCnH, BIPOC/Hispanic participants reported significantly higher scores on depression and all pain measures, with no difference in social support. Among Hispanic participants, those born in the US had the highest pain and depression scores and less social support. To comprehensively understand the experience of minoritized and marginalized communities, future studies in BDs should not only collect and report race and ethnicity but they should also analyze results based on these variables.
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No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the author.