FRIDAY, April 22, 2022 (HealthDay News) — Many adolescent and young men with sickle cell disease (SCD) and their caregivers are unaware of fertility concerns associated with the disease, according to a study published online April 20 in Blood Advances.

Leena Nahata, M.D., from The Ohio State University in Columbus, and colleagues conducted a pilot trial to examine knowledge and perspectives on fertility testing among 20 male adolescents and young adults (14 to 21 years) with SCD and 15 caregivers of these males being seen at a large, Midwestern pediatric academic medical center.

The researchers found that patients and caregivers frequently responded incorrectly or with uncertainty to the Fertility Knowledge and Attitudes Questionnaire items assessing fertility-related knowledge, with 35 percent of patients and 47 percent of caregivers expressing unfamiliarity with how to obtain a semen sample and its purpose (30 and 20 percent, respectively). Older patient age was associated with greater knowledge that SCD might make it more difficult to have a biological child. Roughly one-third of patients and caregivers (37 and 33 percent, respectively) reported an interest in obtaining a semen analysis, while 11 and 40 percent, respectively, said they were not interested. Patients’ preference (45 percent) was to provide the sample “in a private place in the hospital and to have our family transport it to the testing center” (versus producing the sample “at home” or “at the testing center” and “having someone else transport it to the testing center”).

“A developmentally appropriate and inclusive approach to creating fertility-related educational materials and addressing fertility testing barriers is critical for this population, given low health literacy considerations, and limited health care access,” the authors write.

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