Health Equity Concerns in People with Sickle Cell Disease and Recurrent Vaso-Occlusive Crises: Results from an International Survey Study.

BACKGROUND

Vaso-occlusive crises (VOCs) are a hallmark of sickle cell disease (SCD). Individuals with SCD often report stigma and negative healthcare provider (HCP) attitudes when seeking treatment. This study examines health equity concerns and perceived barriers to care among adults with recurrent VOCs.

METHODS

A prospective survey was conducted from May to November 2022 in the US, UK, France, Germany, and Italy. Adults (≥ 18 years) with recurrent VOCs completed a health equity survey and patient-reported outcome measures (PROMs) at month 6. Participants were categorized as experiencing either unfair or fair treatment based on their response to whether they reported ever having been treated unfairly by an HCP due to their race or ethnicity. PROMs were scored, and analyses included Pearson's Chi-squared test and two-sample t-tests.

RESULTS

Among 110 participants, most were female (75.5%), Black/African American (93.5%), and US residents (59.1%). In the past year, 66.7% had ≥ 4 VOCs, and 85.3% used opioids. Most (68.6%) believed they would receive better care if they were of a different race/ethnicity, and 64.7% felt HCPs did not believe their symptoms. About 30% waited > 60 min for emergency department check-in, with additional delays before treatment. Key barriers included reported HCP lack of empathy (58.9%) and SCD knowledge (55.9%). Pain significantly impacted daily activities, with all outcomes worse in the Unfair treatment group.

CONCLUSIONS

Findings highlight significant health equity concerns and barriers to care for adults with SCD and recurrent VOCs, underscoring unmet needs and the humanistic burden in this population.