Infertility and family building perspectives among adults with sickle cell disease.

Sickle cell disease (SCD) and its treatments may lead to gonadal dysfunction. Limited research has examined how these effects translate into actual fertility outcomes and family-building perspectives. We aimed to determine the frequency of infertility and to examine family-building goals, knowledge and concerns among 91 adults with SCD from The Ohio State University Wexner Medical Center SCD clinic. Participants completed surveys capturing their demographic and medical information. Fertility status and family-building perspectives were measured using modified versions of surveys used in fertility-related literature in other populations. Descriptive statistics summarized demographics, frequency of infertility and family-building perspectives. Most participants expressed a desire for children. Approximately half met the clinical definition of infertility at some point, but only a few who met this definition had knowledge of it. Lastly, most reported low to moderate fertility and reproductive concerns potentially due to lack of awareness about their infertility status. These findings underscore the need to increase infertility education and counselling for individuals with SCD.