Social vulnerability, access to care, and outcomes in hemophilia

Despite advances in hemophilia management and outcomes, inequities remain for socially vulnerable populations. This cross-sectional study examined the association between the social vulnerability index (SVI), a composite measure of community vulnerability, and health outcomes among people with hemophilia (PwH) who received treatment across 137 hemophilia treatment centers (HTCs) and were enrolled in the Community Counts Registry between 2013 and 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, 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. A higher proportion of Black (20.8%) and Hispanic (33.0%) participants were in the high vs medium (Black 9.4%, Hispanic 14.2%) or low (Black 4.8%, Hispanic 8.8%) SVI groups. Compared with participants with low SVI, those with high SVI had 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 department 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.