Counseling Pediatric Patients on Fertility and Sexual Function

Since 2006, several medical societies have released guidelines for discussing fertility preservation prior to pediatric cancer treatment. According to the American Society for Reproductive Medicine, a “collaborative, multidisciplinary team approach” is vital for informing minors whose chemotherapy may affect their fertility status about options such as oocyte and sperm cryopreservation.

However, these guidelines do not address the ongoing counseling of young people about their fertility status. In many cases, children are too young at the time of initial counseling to recall the details later in life.  Further, patients receiving gonadotoxic therapies outside the cancer center, or those born with disorders of sex development or other conditions that may impact their future fertility, may not have this kind of counseling available to them at all.

“There’s very little information out there to guide providers about how to initiate conversations about fertility with pediatric patients and families,” says Leena Nahata, MD, an endocrinologist at Nationwide Children’s Hospital and medical director of its Fertility and Reproductive Health Program. “How do you talk to a nine-year-old about reproductive capacity, and what do you do if the parents do not want to include their children in these discussions?”

Traditionally, the medical attitude was to not talk about it at all. Other sensitive issues such as adoption, a new cancer diagnosis and HIV status were often discussed with families but not the pediatric patients themselves. However, the American Academy of Pediatrics (AAP) released a set of guidelines in 1999 advising disclosure of HIV status to children and teens, and numerous studies since then have emphasized the importance of including youth in early, age-appropriate discussions about their health.

In the June 2016 edition of Pediatrics, Dr. Nahata was the lead author of a call for guidelines concerning the sensitive issue of fertility and sexual function counseling. She and her co-authors from Boston Children’s Hospital and Moffitt Cancer Center in Tampa are in discussions with the AAP about forming a platform to begin the process of guideline creation.

“Providers often don’t know how to bring up the topic,” explains Dr. Nahata. “When a patient is seeing several different disciplines of providers, there’s this sort of bystander effect that happens — the thought that maybe somebody else is talking about it, which means that no one talks about it.”

Dr. Nahata and her colleagues at Nationwide Children’s have created a multidisciplinary fertility and reproductive health program to address these issues and empower parents to talk with their children about their options.

“The point of the program is twofold,” she says. “One, to help kids who may have preservation options in a timely fashion. Two, to educate people on their fertility status, their options down the road, and about sexual function and reproductive health in general.”

Reproductive health in pediatrics has traditionally been confined to discussions about contraceptives and STD prevention, with sexual function being considered an adult issue.

“Talking to kids about sex may be harder than talking to kids about fertility in a lot of ways,” Dr. Nahata says.

According to Dr. Nahata, pediatric providers need to be aware of possible issues with sexual function and/or fertility in their pediatric patients, especially considering the growing trend of patients staying with their providers well into adulthood.

“These kids are now becoming adults under our care,” Dr. Nahata says. “We really need to take on the responsibility of talking about fertility and sexual function from the beginning in an age-appropriate fashion. Given that we don’t have comprehensive guidelines yet, we need to educate patients and families so that parents can know what to do, or be sent somewhere to start those conversations.”

Reference:
Nahata L, Quinn GP, Tishelman A. A call for fertility and sexual function counseling in pediatrics. Pediatrics. 2016 Jun;137(6).