The Impact of Neighborhood Inequities on Engagement in Care among Adolescents and Young Adults with Sickle Cell Disease

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Interdisciplinary Centers, Units and Projects::Center for Undergraduate Research and Fellowships (CURF)::Fall Research Expo
Degree type
Discipline
Psychology
Subject
Sickle
Neighborhood
Inequities
Adolescent
Adult
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Copyright date
2025-10-04
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Author
Bakir, Sana
Prussien, Kemar V.
Contributor
Burke , Margaret Mary
Abstract

Introduction:
Sickle cell disease (SCD) is an inherited blood disorder that results in severe anemia, acute pain, and end-organ damage. Adolescents and young adults (AYA) with SCD, who are primarily Black or African American, are especially vulnerable to increased morbidity and mortality due to barriers to care influenced by structural racism. Many AYA with SCD live in poverty-stricken neighborhoods shaped by historical redlining and chronic disinvestment. Neighborhood factors, such as poverty and low household income, have been consistently associated with disparities in access to care across populations. In contrast to children with SCD, AYA with SCD tend to have higher emergency department reliance (EDR), lower clinic attendance, and lower treatment attendance. Yet, the pathways connecting neighborhood factors to engagement in care behaviors in SCD remain under-studied. Thus, this study aims to evaluate how neighborhood inequities influence the EDR, clinic attendance, and treatment attendance of AYA with SCD.

Methods:
Fifty-seven AYA with SCD (ages 16 to 25) were enrolled in a prospective, longitudinal study. On the baseline survey, AYA provided the full address of the home at which they spent most of their time during the year prior. These addresses were geocoded and linked to 2020 U.S. Census tract-level data to obtain poverty rate and median household income. To explore the relationship between these neighborhood factors and patterns of care engagement, healthcare utilization within 6 months of participants completing the baseline survey was assessed via electronic health record review. Three primary metrics were reviewed: EDR, outpatient hematology clinic attendance ratio, and outpatient treatment attendance ratio.

Pearson correlations were used to assess bivariate correlations between neighborhood factors and engagement in care variables. Multivariate linear regression analyses were conducted to further determine the association between these variables when controlling for participant age and gender.

Results: Forty-nine AYA (Mean age = 20.1, SD = 2.53; 40.8% Female) completed baseline procedures. There was no significant association between neighborhood household income with EDR (r = -.20, p = .209) or clinic attendance ratio (r = .13, p = .407); however, the correlation between neighborhood household income and treatment attendance ratio approached significance (r = .37, p = .072). Neighborhood poverty was not associated with EDR (r = .21, p = .174), its association with clinic attendance ratio approached significance (r = -.26, p = .092), and it was significantly and negatively associated with treatment attendance ratio (r = -.45, p = .023). Notably, poverty remained a significant predictor of treatment attendance even when controlling for participant age and gender in a multivariate linear regression analysis.

Conclusion:
When AYA with SCD live in neighborhoods with higher poverty, they engage less in outpatient treatments. This finding suggests that socioeconomic disadvantages at the neighborhood level may restrict opportunities for consistent and preventative care, reinforcing disparities in disease management. Future research with larger samples is needed to further explore mechanisms of the associations between neighborhood factors with engagement in care in SCD.

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2025-09-15
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Funded by Penn Undergraduate Research Mentoring (PURM) program
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