Adolescent and young adult males with sickle cell disease often unaware of fertility issues

May 2022 Science Nalinee Pathak

A pilot study done in the US suggests that adolescents and young adults (AYAs) with sickle cell disease (SCD) undergoing treatment can have disease-related fertility issues. These findings were published in the journal Blood Advances.

Due to the availability of better treatment approaches, the survival rates of patients with SCD have significantly improved. Therefore, it is essential to address men’s reproductive health with SCD. Past research has reported reproductive abnormalities in many men with SCD. However, fertility testing for AYA with SCD and patient plus caregiver guidelines on this topic are missing.

Study method

The researchers surveyed 40 AYAs with SCD and their caregivers at a large paediatric academic centre in the Midwest. The study’s objective was to examine the knowledge and attitudes about fertility testing in men with SCD.


The final analysis included 20 male AYs (14-21 years of age) and 15 caregivers. It was found that 85% of the SCD patients expressed their desire to have a biological child. Sixty per cent of the caregivers also reported that their son wanted to have children in the future. A significant number of patients (35%) and caregivers (47%) were unfamiliar with obtaining semen, and 30% and 20% did not know its purpose. Although, it was found that older AYAs had better knowledge about disease-related fertility issues. Importantly, AYAs (37%) and caregivers (33%) showed interest in semen analysis, 11% and 40% with no interest, and 52% and 27% were unsure about it.


According to Leena Nahata, MD, a paediatric endocrinologist and associate professor of clinical paediatrics at The Ohio State University College of Medicine and founder of the Fertility and Reproductive Health Program at Nationwide Children’s Hospital, “fertility-related discussions need to be better integrated into clinical care for this population, starting in early adolescence, so that patients and caregivers are aware of potential risks and testing options”.


Nahata L, Stanek C, Theroux CI, Olsavsky AL, et al. Fertility Testing Knowledge and Attitudes in Male Adolescents and Young Adults with SCD and Their Caregivers: A Pilot Study. Blood Adv. 2022 Apr 20:blood advances.2022007004