Starting the Conversation on Sickle Cell Disease and Reproductive Health

Starting the Conversation on Sickle Cell Disease and Reproductive Health 1024 575 Katie Brind'Amour, PhD, MS, CHES

Adolescents and young adults with sickle cell disease — and their caregivers — care about future fertility. But what should doctors tell them?

Until just a few decades ago, sickle cell disease (SCD) was often fatal in childhood. Now that more patients reach adulthood, clinicians and researchers need to ask — and answer — questions about fertility, parenthood and contraception. In a recent study led by physician-researchers at Nationwide Children’s Hospital, adolescents and young adults with SCD and their caregivers reported interest in reproductive health topics, but very few reported ever receiving such information from their health care providers.

The researchers analyzed surveys completed by 18 patient-caregiver dyads during a 10-month period at Nationwide Children’s. Two-thirds of all patient participants reported wanting future children, and 83 percent of caregivers hoped to have a grandchild in the future. However, only 16 percent of patients and 27 percent of caregivers reported receiving information about fertility, and only 11 and 22 percent of patients and caregivers, respectively, reported receipt of birth control information.

“As clinicians, we’ve focused on survival for so long that we don’t have a great understanding of what people’s goals and intentions are for parenthood later in life,” says Susan Creary, MD, a hematologist at Nationwide Children’s and senior author on the study, published in Pediatric Blood & Cancer. “No matter what patients decide about biological parenthood or fertility, sickle cell disease and its treatments have potential implications for patients’ reproductive health.”

Patients with SCD will pass on an affected gene to future children. Depending on their partner’s status, this could result in a child with SCD or sickle cell trait. SCD also carries risks for women during pregnancy, and mounting research suggests that treatments used to manage the condition, such as hydroxyurea and bone marrow transplants, may impair fertility. Unfortunately, most respondents did not identify the disease or its treatments as potential barriers to fertility, and few patients reported interest in learning more about their birth control options.

“Even though the conversations may be difficult, providers need to know it’s their responsibility to bring it up, because fertility and reproductive health are topics that need to be addressed in this population,” says Leena Nahata, MD, an endocrinologist at Nationwide Children’s and medical director of the hospital’s Fertility and Reproductive Health Program. Dr. Nahata is lead author on the publication.

The researchers suggest that discussion and management of birth control may fit best with the primary care provider role and drug side effects and fertility preservation with subspecialists. However, they recommend that physicians not assume another clinician will broach the subject. They suggest informing families about emerging data and letting them know about available options, using fertility-related work in pediatric cancer as a framework.

“We need to be thoughtful about treatment and counseling in such a wide age range of patients with sickle cell disease,” says Dr. Creary. “There’s obviously a lot to talk about during appointments, so we are exploring a formal process for when and how to manage fertility-related conversations at Nationwide Children’s.”


Nahata L, Caltabellotta NM, Ball K, O’Brien SH, Creary SE. Desire for parenthood and reproductive health knowledge in adolescents and young adults with sickle cell disease and their caregiversPediatric Blood & Cancer. 2017 Sep 25. [Epub ahead of print]

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About the author

Katherine (Katie) Brind’Amour is a freelance medical and health science writer based in Pennsylvania. She has written about nearly every therapeutic area for patients, doctors and the general public. Dr. Brind’Amour specializes in health literacy and patient education. She completed her BS and MS degrees in Biology at Arizona State University and her PhD in Health Services Management and Policy at The Ohio State University. She is a Certified Health Education Specialist and is interested in health promotion via health programs and the communication of medical information.