Social Vulnerability and Access to Hemophilia Care and Outcomes

• Higher social vulnerability among those with hemophilia is associated with more bleeding, worse quality of life, and less-optimized care. • Further research is required to highlight those most socially vulnerable and the interventions needed to address these disparities. Despite advances in hemophilia management and outcomes, inequities remain for socially vulnerable populations. This study examined the association between the social vulnerability index (SVI), a composite measure of community vulnerability, and health outcomes among people with hemophilia (PwH). This cross-sectional study included PwH who received treatment across 137 hemophilia treatment centers (HTCs) and were enrolled in the Community Counts Registry between 2013-2022. Participants’ overall percentile SVI rank was based on their zip codes and grouped as low (0-0.33), medium (>0.33-0.66), or high (>0.66-1.0); higher scores corresponded to higher vulnerability. Adjusted odds ratios (aOR) with 95% confidence intervals (CI) were used to assess SVI and treatment and outcomes. Among 14,074 PwH, 31.7%, 42.7%, and 25.5% were categorized as having low, medium, and high SVI, respectively at enrollment. There was a higher proportion of Black (20.8%) and Hispanic (33.0%) participants in the high vs medium (Black 9.4%, Hispanic 14.2%) or low (Black 4.8%, Hispanic 8.8%) SVI groups. Compared to participants with low SVI, those with high SVI had a higher odds of treated bleeds (aOR=1.09;95%CI:1.02-1.16), intracranial hemorrhage (aOR=1.22;95%CI:1.04-1.42), inpatient admission (aOR=1.40;95%CI:1.28-1.52), emergency room visits (aOR=1.27;95%CI:1.20-1.34), chronic pain (aOR=1.20;95%CI:1.14-1.26), limited physical function (aOR=1.24;95%CI:1.18-1.31), and missed days from school/work (aOR=1.13;95%CI:1.05-1.21) and were less likely to be on extended half-life products (aOR=0.90;95%CI:0.83-0.97) or emicizumab (aOR=0.78;95%CI:0.72-0.84). In this nationwide study of PwH who were treated at US HTCs, those with a high SVI had inferior clinical outcomes, worse quality of life, and less-optimized care. Strategies are needed to mitigate social vulnerability beyond hemophilia clinics.