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Many Aspects of Routine Reproductive Health Care Lacking Among Young Adults with Sickle Cell Disease

October 18, 2023

November 2023

Anna Azvolinsky, PhD

Anna Azvolinsky, PhD, is a freelance medical and science journalist based in New York City.

A study of young adults with sickle cell disease (SCD) transitioning from pediatric to adult care suggests that these patients are not receiving enough routine reproductive health care, including contraception counseling and the human papilloma virus (HPV) vaccinations. The single-center study, which was published in Blood Advances, found that 55% of the young adults with SCD had documentation that they had received contraception counseling, and 42% had completed their HPV vaccination series.

“We found that young adults with SCD at our center who were transitioning to adult care were largely sexually active but had substantive gaps in many aspects of their routine reproductive health care,” said study author Susan E. Creary MD, an associate professor of pediatrics and pediatric hematology at The Ohio State University College of Medicine and the Abigail Wexner Research Institute at Nationwide Children’s Hospital in Columbus, Ohio.

Reproductive health is an important facet of health care for young adult patients with SCD. In the study, Dr. Creary and her colleagues described the sexual activity, contraception counseling and use, sexually transmitted infection (STI) testing and diagnosis, and HPV vaccination series completion among 53 individuals with SCD, age 18 to 21, who had had their final pediatric hematology visit at Nationwide Children’s Hospital between 2015 and 2019. The mean age of the participants was 21, and 53% were female. Participants were Black/African American, African, or multiple races. Thirty had a primary care provider at Nationwide Children’s Hospital, but only seven of them had a visit with that provider during their last year of pediatric hematology care.

Of the 53 subjects, 33 (62%) were documented to be sexually active. Despite reported contraception use among 94% (n=31) of the young adults who were sexually active, three (10%) of the females had documented pregnancies, and seven (24%) of these young adults were diagnosed with one or more sexually transmitted infections, including chlamydia, gonorrhea, gardnerella, trichomoniasis, and herpes.

Twenty-two participants (15 who were sexually active; seven who were not) had received their full HPV vaccination schedule, but 18 young adults who were documented to be sexually active had not.

Twenty-nine (55%) of all 53 participants had documentation that they had received contraception counseling as part of their health care. Among the 30 participants with a Nationwide Children’s Hospital primary care provider (PCP), 10 (33%) had contraception counseling documented by their hematologist, two had it by the PCP and their hematologist, and four had it by some other provider.

These data suggest that young adults with SCD may not be receiving enough contraception, pregnancy, and STI counseling and care.

“Our findings were particularly concerning because these young adults were largely not engaged in primary care, where routine reproductive health services are largely provided, and because they are also at risk of SCD-specific complications from not receiving this important care,” said Dr. Creary.

Because this was a single-center retrospective study, the authors are cautious to generalize their findings to the broader population of young adults with SCD in the U.S. “Additional studies that include individuals from diverse settings are warranted, especially since young adults with SCD in the U.S. are primarily from minority populations, and there are gaps in the routine reproductive health care that is provided to young, non-Hispanic Black persons in the U.S. in general as well,” noted Dr. Creary.

“Our findings are a call to action for multicenter prospective studies to confirm these gaps and to inform the development of interventions and guidelines to optimize their reproductive outcomes,” Dr. Creary added.

Any conflicts of interest declared by the authors can be found in the original article.

Reference

Shankar D, Stanek CJ, Bangudi S et al. Contraception, pregnancy, and STI counseling and care among transitioning young adults with sickle cell disease. [published online ahead of print, 2023 Sep 18]. Blood Adv. 2023;bloodadvances.2023011008. doi: 10.1182/bloodadvances.2023011008.

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