Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 Mar 6;24(1):291.
doi: 10.1186/s12913-024-10717-6.

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

Gustavo G Mendez  1 , Judith M Nocek  1 , Donald J Brambilla  2 , Sara Jacobs  2 , Oladipo Cole  3 , Julie Kanter  4 , Jeffrey Glassberg  5 , Kay L Saving  6 , Cathy L Melvin  7 , Robert W Gibson  8 , Marsha Treadwell  9 , George L Jackson  10   11   12 , Allison A King  3 , Victor R Gordeuk  1 , Barbara Kroner  2 , Lewis L Hsu  13 ; Sickle Cell Disease Implementation Consortium
Affiliations

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

Gustavo G Mendez et al. BMC Health Serv Res. .

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.

Keywords: Distressed communities Index; Linkage to care; SCD center affiliation; Sickle cell disease; Social determinants of health.

PubMed Disclaimer

Conflict of interest statement

The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
SCDIC sites and distribution of DCI scores for each site. Left panel: Distributions of DCI scores shown as box and whisker plots The vertical line for each box shows the interquartile range (IQR), the horizontal line is the median, and the diamond is the mean. Right panel: locations of 8 sites in SCDIC
Fig. 2
Fig. 2
Percent unaffiliated by age category
Fig. 3
Fig. 3
Insurance type by DCI quintile
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

References

    1. Lanzkron S, Carroll CP, Haywood C., Jr Mortality rates and age at death from sickle cell disease: U.S., 1979–2005. Public Health Rep. 2013;128(2):110–6. doi: 10.1177/003335491312800206. - DOI - PMC - PubMed
    1. Kanter J, Kruse-Jarres R. Management of sickle cell disease from childhood through adulthood. Blood Rev. 2013;27(6):279–87. doi: 10.1016/j.blre.2013.09.001. - DOI - PubMed
    1. Grosse SD, Schechter MS, Kulkarni R, Lloyd-Puryear MA, Strickland B, Trevathan E. Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders. Pediatrics. 2009;123(1):407–12. doi: 10.1542/peds.2007-2875. - DOI - PubMed
    1. Leschke J, Panepinto JA, Nimmer M, Hoffmann RG, Yan K, Brousseau DC. Outpatient follow-up and rehospitalizations for sickle cell disease patients. Pediatr Blood Cancer. 2012;58(3):406–9. doi: 10.1002/pbc.23140. - DOI - PubMed
    1. National Academies of Science, Engineering and Medicine (NASEM). Addressing sickle cell disease: A strategic plan and blueprint for action. Washington, DC; 2020. - PubMed