Birth Prevalence of Sickle Cell Disease and County-Level Social Vulnerability - Sickle Cell Data Collection Program, 11 States, 2016-2020.

Abstract

Sickle cell disease (SCD) remains a public health priority in the United States because of its association with complex health needs, reduced life expectancy, lifelong disabilities, and high cost of care. A cross-sectional analysis was conducted to calculate the crude and race-specific birth prevalence for SCD using state newborn screening program records during 2016-2020 from 11 Sickle Cell Data Collection program states. The percentage distribution of birth mother residence within Social Vulnerability Index quartiles was derived. Among 3,305 newborns with confirmed SCD (including 57% with homozygous hemoglobin S or sickle β-null thalassemia across 11 states, 90% of whom were Black or African American [Black], and 4% of whom were Hispanic or Latino), the crude SCD birth prevalence was 4.83 per 10,000 (one in every 2,070) live births and 28.54 per 10,000 (one in every 350) non-Hispanic Black newborns. Approximately two thirds (67%) of mothers of newborns with SCD lived in counties with high or very high levels of social vulnerability; most mothers lived in counties with high or very high levels of vulnerability for racial and ethnic minority status (89%) and housing type and transportation (64%) themes. These findings can guide public health, health care systems, and community program planning and implementation that address social determinants of health for infants with SCD. Implementation of tailored interventions, including increasing access to transportation, improving housing, and advancing equity in high vulnerability areas, could facilitate care and improve health outcomes for children with SCD.

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Citation

Published Version (Please cite this version)

10.15585/mmwr.mm7312a1

Publication Info

Kayle, Mariam, Audrey L Blewer, Wei Pan, Jennifer A Rothman, Carri S Polick, Joshua Rivenbark, Elliott Fisher, Camila Reyes, et al. (2024). Birth Prevalence of Sickle Cell Disease and County-Level Social Vulnerability - Sickle Cell Data Collection Program, 11 States, 2016-2020. MMWR. Morbidity and mortality weekly report, 73(12). pp. 248–254. 10.15585/mmwr.mm7312a1 Retrieved from https://hdl.handle.net/10161/30592.

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Scholars@Duke

Blewer

Audrey L Blewer

Assistant Professor in Family Medicine and Community Health

Audrey L. Blewer, PhD, MPH is an epidemiologist and resuscitation scientist in the Department of Family Medicine and Community Health and Department of Population Health Sciences within Duke University School of Medicine. Dr. Blewer completed her Doctor of Philosophy in Epidemiology at the University of Pennsylvania from the Department of Biostatistics, Epidemiology, and Informatics and her Master of Public Health in Social in Behavioral Sciences from the University of Florida.

Dr. Blewer has published in several noteworthy journals such as Circulation, Lancet Public Health, Circulation Cardiovascular Quality and Outcomes, and Critical Care Medicine. She is recognized in the field of resuscitation science nationally and internationally. Dr. Blewer is contributing to the upcoming American Heart Association Guidelines writing group for Resuscitation Education and serves on the Editorial Board for the journal Resuscitation Plus. Dr. Blewer works on interdisciplinary research projects at both Duke and Duke-NUS Medical Center

Pan

Wei Pan

Professor in the School of Nursing

Dr. Wei Pan is a Professor and Director of Health Statistics and Data Science at the Duke University School of Nursing. He also has a secondary appointment with the Department of Population Health Sciences at the Duke University School of Medicine. He received his Ph.D. in Measurement & Quantitative Methods from Michigan State University and M.S. in Statistics from Fuzhou University, China. His research interests are causal inference, advanced statistical modelingdata analyticsmeta-analysis, and psychometrics; and their applications in the social, behavioral, and health sciences. He has been involved as a Principal Investigator, Co-Investigator, and Principal Biostatistician in many research projects funded by federal agencies, such as NIH, NSF, and the like. He has published numerous refereed journal articles on both methodological and applied research. He was awarded the Outstanding Ph.D. Faculty Award by the Duke University School of Nursing. He was an Invited Expert Observer in the Reference Group on Health Statistics of the World Health Organization. He is a Science Board Member of the American Public Health Association. 

Rothman

Jennifer Ann Rothman

Professor of Pediatrics

Sickle Cell Disease
Bone Marrow Failure Syndromes
General Hematology

Strouse

John J. Strouse

Associate Professor of Medicine

My research has focused on the epidemiology, risk factors, and prevention of the pulmonary and central nervous system complications of sickle cell disease and includes retrospective and prospective cohort studies and clinical trials.  I received my Ph.D. in clinical investigation from the Johns Hopkins Bloomberg School of Public Health for a series of studies to identify predictors of cognitive function in children with sickle cell disease.  This work has expanded to the evaluation of the interaction between environment and disease in both children and adults and the functional evaluation of adults with sickle cell disease.  My other research interests include the application of large clinical, research, and administrative databases to the study of rare hematological diseases and interventions to improve quality of and access to care for sickle cell disease. I serve on the American Society of Hematology Sickle Cell Taskforce and Sickle Cell Pain Guideline Panel and am co-chair of the American Society of Hematology Healthcare Professional Education and Training Work Group.

 


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