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BMC Health Services Research
Published in: BMC Health Services Research 1/2024

Open Access 01-12-2024 | Research

Social determinants of health and treatment center affiliation: analysis from the sickle cell disease implementation consortium registry

Authors: Gustavo G. Mendez, Judith M. Nocek, Donald J. Brambilla, Sara Jacobs, Oladipo Cole, Julie Kanter, Jeffrey Glassberg, Kay L. Saving, Cathy L. Melvin, Robert W. Gibson, Marsha Treadwell, George L. Jackson, Allison A. King, Victor R. Gordeuk, Barbara Kroner, Lewis L. Hsu, Sickle Cell Disease Implementation Consortium

Published in: BMC Health Services Research | Issue 1/2024

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Abstract

Background

Adults with sickle cell disease (SCD) suffer early mortality and high morbidity. Many are not affiliated with SCD centers, defined as no ambulatory visit with a SCD specialist in 2 years. Negative social determinants of health (SDOH) can impair access to care. Hypothesis: Negative SDOH are more likely to be experienced by unaffiliated adults than adults who regularly receive expert SCD care.

Methods

Cross-sectional analysis of the SCD Implementation Consortium (SCDIC) Registry, a convenience sample at 8 academic SCD centers in 2017–2019. A Distressed Communities Index (DCI) score was assigned to each registry member’s zip code. Insurance status and other barriers to care were self-reported. Most patients were enrolled in the clinic or hospital setting.

Results

The SCDIC Registry enrolled 288 Unaffiliated and 2110 Affiliated SCD patients, ages 15-45y. The highest DCI quintile accounted for 39% of both Unaffiliated and Affiliated patients. Lack of health insurance was reported by 19% of Unaffiliated versus 7% of Affiliated patients. The most frequently selected barriers to care for both groups were “previous bad experience with the healthcare system” (40%) and “Worry about Cost” (17%). SCD co-morbidities had no straightforward trend of association with Unaffiliated status. The 8 sites’ results varied.

Conclusion

The DCI economic measure of SDOH was not associated with Unaffiliated status of patients recruited in the health care delivery setting. SCDIC Registrants reside in more distressed communities than other Americans. Other SDOH themes of affordability and negative experiences might contribute to Unaffiliated status. Recruiting Unaffiliated SCD patients to care might benefit from systems adopting value-based patient-centered solutions.
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Metadata
Title
Social determinants of health and treatment center affiliation: analysis from the sickle cell disease implementation consortium registry
Authors
Gustavo G. Mendez
Judith M. Nocek
Donald J. Brambilla
Sara Jacobs
Oladipo Cole
Julie Kanter
Jeffrey Glassberg
Kay L. Saving
Cathy L. Melvin
Robert W. Gibson
Marsha Treadwell
George L. Jackson
Allison A. King
Victor R. Gordeuk
Barbara Kroner
Lewis L. Hsu
Sickle Cell Disease Implementation Consortium
Publication date
01-12-2024
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2024
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-024-10717-6

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