Many male AYAs with sickle cell disease unaware of disease-related fertility issues
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Most male adolescents and young adults with sickle cell disease reported a desire to have children later in life but few knew of disease-related fertility issues, according to study results published in Blood Advances.
Additionally, most patients and their caregivers had no knowledge about fertility testing, researchers noted.
Rationale and methods
As survival rates for sickle cell disease continue to improve, addressing reproductive health has become increasingly important, Leena Nahata, MD, pediatric endocrinologist and associate professor of clinical pediatrics at The Ohio State University College of Medicine and founder of the Fertility and Reproductive Health Program at Nationwide Children’s Hospital, told Healio.
“Research to date shows semen parameters are abnormal in many men with sickle cell disease — both due to implications of the disease and its treatments,” Nahata said. “Experts have suggested offering fertility testing to male adolescents and young adults with sickle cell disease, yet formal guidelines have not been established, and patient and caregiver perspectives on this topic have not been examined.”
For this reason, researchers conducted a survey study examining knowledge and attitudes about fertility testing among 40 male adolescents and young adults (AYAs) with sickle cell disease and their caregivers at a large pediatric academic center in the Midwest.
Key findings
The final analysis included 20 male AYAs aged 14 to 21 years with sickle cell disease who completed clinic visits during the study timeframe, along with 15 caregivers.
Results showed 85% of patients agreed or strongly agreed that they wanted a biological child in the future, whereas 60% of caregivers reported their son had interest in having a biological child. Regarding fertility knowledge, 35% of patients and 47% of caregivers reported unfamiliarity with how to obtain a semen sample, and 30% and 20% did not know its purpose.
Researchers observed an association of older AYA age with greater knowledge that their sickle cell disease may cause difficulty in having a biological child (P = .02).
Moreover, 37% of AYAs and 33% of caregivers reported an interest in obtaining a semen analysis, followed by 11% and 40% who reported no interest and 52% and 27% who reported being unsure. Forty-five percent reported the preferred option for providing the sample to be “in a private place in the hospital and to have family transport it to the testing center.”
Implications
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 said.
“These conversations should highlight known and unknown fertility-related impacts of sickle cell disease and its treatments, to promote autonomy, facilitate shared decision-making and minimize future regret,” she added. “During the past decade, there have been many advances in fertility-related research in oncology, while other populations have been understudied, including those with sickle cell disease. We need more research on fertility-related outcomes in this population.”
Moreover, the development of culturally tailored educational materials and assessment of fertility testing barriers are critical next steps for this population, which already faces barriers to equitable health care, she said.
“Ultimately this education should be expanded to include other aspects of reproductive health and be inclusive of both males and females,” Nahata said.
For more information:
Leena Nahata, MD, can be reached at Abigail Wexner Research Institute at Nationwide Children’s Hospital, 431 S. 18th St., Columbus, OH 43205; email: leena.nahata@nationwidechildrens.org.
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