Close
Enter your
text here

Fertility Knowledge Gaps Continue Into Adulthood for People With Sickle Cell Disease

Fertility Knowledge Gaps Continue Into Adulthood for People With Sickle Cell Disease 1024 683 Pam Georgiana

Study findings support earlier, ongoing fertility education and counseling beginning in pediatric care.

Sickle cell disease and its treatments can affect reproductive health, yet new research suggests patients may still have significant knowledge gaps about infertility when they reach adulthood.

In a study published in the British Journal of Haematology, researchers surveyed 91 adults with sickle cell disease, ages 21 to 39, receiving care at The Ohio State University Wexner Medical Center. The survey asked about their medical history, family-building goals, fertility knowledge and reproductive concerns.

Leena Nahata, MD, founding medical director of the Fertility and Reproductive Health Program at Nationwide Children’s Hospital, was a senior co-author of the study. She is also the associate division chief for research for the Division of Endocrinology and principal investigator in the Center for Biobehavioral Health in the Abigail Wexner Research Institute at Nationwide Children’s.

Studio portrait of Dr. Leena Nahata

Leena Nahata, MD

“We’ve seen in our work with adolescents and young adults with sickle cell disease that many want to have children someday but know little about how the disease or its treatments could affect their fertility,” Dr. Nahata says. “As more people with sickle cell disease are living well into adulthood, we wanted to understand what their fertility knowledge and experiences looked like at that stage of life.”

To assess infertility, the researchers used a variation of the World Health Organization’s clinical definition of infertility. They asked participants if they had experienced a period of more than one year of unprotected sexual intercourse with the same partner without achieving pregnancy. Participants were also asked whether they had at least one biological child. Those who responded “no” to both questions were classified as having unclear fertility status.

Of the 89 participants who answered the infertility question, 45, or 51%, met the study’s definition of infertility at some point. Yet only five of those 45 participants, or 11%, reported that they currently or previously experienced fertility problems.

The findings have particular implications for family building. Sixty-two percent of all participants said they wanted children or additional children. About 40% also wanted more information about fertility preservation, fertility treatment or assisted reproductive technologies.

“The disconnect was striking,” Dr. Nahata says. “Many participants met the study’s definition of infertility without recognizing that they may have experienced a fertility problem. At the same time, most wanted children or additional children.”

Sickle cell disease itself may affect fertility in males and females. However, current fertility counseling guidelines primarily address patients undergoing stem cell transplantation or gene therapy, which are associated with infertility. Evidence regarding more widely used treatments, such as hydroxyurea, is less clear.

Fertility research in sickle cell disease has lagged behind other fields, leaving clinicians with unanswered questions about individual patients’ risks.

“We don’t have all the answers, and clinicians should be transparent about that,” Dr. Nahata says. “But uncertainty shouldn’t prevent us from talking about what we do know. Patients need that information to ask questions and make informed decisions about their reproductive health.”

For pediatricians, the findings create an opportunity to help close that gap. Sickle cell disease teams may be best positioned to discuss disease- and treatment-specific fertility risks. Primary care physicians can reinforce reproductive health education at the appropriate time and help make fertility an ongoing part of conversations as patients move through adolescence.

Reference:

Karkare T, Cronin RM, Roche C, Young A, Quaye N, Liles SM, Ebersole AM, Creary S, Nahata L. Infertility and family building perspectives among adults with sickle cell disease. Br J Haematol. 2026;208(3):1054-1062. doi:10.1111/bjh.70315

Image credit: Nationwide Children’s

About the author

Pam Georgiana is a brand marketing professional and writer located in Bexley, Ohio. She believes that words bind us together as humans and that the best stories remind us of our humanity. She specialized in telling engaging stories for healthcare, B2B services, and nonprofits using classic storytelling techniques. Pam has earned an MBA in Marketing from Capital University in Columbus, Ohio.

You might also like