Researchers urge specific guidelines for fertility, sexual function counseling in at-risk pediatric patients

The drugs and therapies used to treat medical conditions often come with side effects. Doctors, pharmacists and other health care professionals strive to be sure we are made aware. But when the patient is under age, and the effects include possibly permanent impacts on the ability to have biological children and/or sexual function, who should be told - the patient, the parent or both? And who should communicate these details?

In a commentary published online May 19 ahead of print publication in the journal Pediatrics, researchers from two renowned children's hospitals and a National Cancer Institute-designated Comprehensive Cancer Center call for the creation of a panel of experts to develop communication guidelines for pediatric providers to use with young patients facing these issues.

The paper, titled "A Call for Fertility and Sexual Function Counseling in Pediatrics," was co-authored by Leena Nahata, M.D., pediatric endocrinologist and medical director of the Fertility and Reproductive Health Program at Nationwide Children's Hospital; Gwendolyn Quinn, Ph.D., senior member of the Health Outcomes and Behavior Program at Moffitt Cancer Center; and Amy Tishelman, Ph.D., senior staff psychologist and Director of Clinical Research in the Disorders of Sex Development-Gender Management Service (DSD-GeMS) and Director of Psychological Services in the Department of Urology at Boston Children's Hospital.

The authors cite a growing body of literature on the long-term impact of various pediatric conditions and treatments on fertility and sexual function. Thus far, the main focus of research has been on fertility preservation prior to cancer therapy. There is minimal guidance for providers with regard to discussing issues related to fertility and sexual function with pediatric patients after cancer treatment has ended, and on an ongoing basis in other pediatric populations. Although awareness about reproductive and sexual health is gradually increasing in the care of patients with rheumatic diseases, hematologic conditions, disorders of sex development, transgender health, and many genetic conditions, consistent practices regarding counseling are still lacking. In some cases, the initial discussions about fertility may take place in infancy or early childhood, resulting in a situation where the patient could remain unaware of these implications until much later in life.

In the past, it was left to parents to decide what medical information, if any, would be shared with their child. However, adolescents and young adults have begun to speak out about the negative impact of secrecy, and extensive literature in HIV, cancer and other illnesses has shown the importance of age-appropriate information sharing.

Precedent exists for communication guidelines for young patients. In 1999, an American Academy of Pediatrics (AAP) recommendation encouraged the disclosure of HIV status to children. Several groups have issued guidelines for providers to discuss risk and refer eligible patients to specialists who can discuss preservation options before such treatment begins.

However, these guidelines stop short of clarifying which member(s) of the care team should broach the subject of potential impacts, at what age, and how to continue to address these issues on an ongoing basis. Further, they do not address the ethical concerns that arise for providers when parents choose not to share such information with patients approaching the age of consent. "It may be devastating for parents to learn their child's future parenting opportunities are limited, and they may also be grieving their own inability to have biological grandchildren," notes lead author Nahata.

Co-author Quinn cites the challenges faced from the health care provider's perspective. "Since providers from several disciplines are often involved in these patients' care, the assumption that 'someone else will talk about it' risks that no provider takes responsibility for the discussion." Tishelman also notes that the opposite can occur, and several providers can broach the topic of fertility and/or sexual function independently, with the risk of conveying contradictory or inconsistent information. In addition, it may be particularly difficult for pediatricians to discuss issues of sexual function with adolescents, who may be confused and/or embarrassed about broaching concerns independently or discussing such topics with parents.

The authors suggest that an interdisciplinary task force should be formed to develop specific guidelines for fertility and sexual function counseling in at-risk pediatric populations. They urge that these guidelines specify key points to cover at different developmental stages, discuss which health care provider holds responsibility for these communications, and provide direction on how to balance the goals and wishes of parents and patients.

The authors conclude that "Acknowledging the impact of reproductive and sexual function on patients' long-term quality of life and incorporating routine counseling on these issues into treatment plans is essential to achieving optimal outcomes."