Although a majority of adolescents and young adults (AYAs) with sickle cell disease (SCD) would like to have a biological child in the future, many of them and their caregivers are not aware of fertility testing processes, according to the results of a small pilot study published in the Blood Advances.1

“As clinicians, we need to do a better job of integrating discussions regarding SCD-associated fertility concerns with our patients, starting at an early age, and with caregivers,” Leena Nahata, MD, of the Abigail Wexner Research Institute at Nationwide Children’s Hospital, said in a press release.2

Due to advances in treatment, AYAs with SCD are living longer into their reproductive years with better quality of life.1 Therefore, reproductive health, including fertility, has become an increasingly important topic for this population. The aim of this study was to evaluate the knowledge and perspectives about fertility testing among AYA men with SCD.

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In the pilot study, 20 males with SCD aged 14 to 21 years and 15 caregivers completed a survey developed by the authors, the Fertility Knowledge and Attitudes Questionnaire (FKAQ), which included questions about sociodemographics, parenthood goals, fertility-related knowledge, and other factors that can influence interest in fertility testing.

There were 85% of patients who agreed or strongly agreed that they wanted a biological child in the future, and the majority of caregivers also believed that their son was interested in having a biological child.

Sperm banking prior to initiating hydroxyurea is common among adult males with SCD; however, in this cohort, 37% of patients were interested in obtaining a semen analysis and 52% were unsure. There were 35% of patients who were unfamiliar with how to obtain a semen sample and 30% were unsure of its purpose for testing.

“The unfamiliarity with fertility testing processes and other fertility-related knowledge gaps among AYAs and their caregiver are concerning,” the authors wrote. “These findings suggest tailored fertility-focused education programs and inclusion of fertility-related topics into multidisciplinary SCD care are needed starting in early adolescence.”

When asked the preferred approach for providing a semen sample, a private place in the hospital with the family transporting the sample to the testing center was most common at 45%, rather than producing the sample at home, at the testing center, or having somebody other than the family transport the sample.

Dr Nahata highlighted that “we need more research on fertility-related outcomes in this population because, in order to fully educate adolescents and young adults and their parents, we need to first know what to tell them.” She added“It’s also crucial that we develop culturally-tailored educational materials and assess fertility testing barriers, as we know this population already faces barriers to equitable health care.”


  1. Nahata L, Stanek C, Theroux CI, et al. Fertility testing knowledge and attitudes in male adolescents and young adults with SCD and their caregivers: a pilot study. Blood Adv. Published online April 20, 2022. doi: 10.1182/bloodadvances.2022007004
  2. Study shines light on fertility education gaps among adolescent and young adult men with sickle cell disease. News release. American Society of Hematology. April 20, 2022. Accessed May 11, 2022.