A 17-year-old who underwent a stem cell transplant 10 years prior presents to his pediatrician for a well-child visit. Speaking with the pediatrician alone, he mentions he is dating someone and is wondering if he will be able to have sex normally and have children. He doesn’t know if this was discussed when he was undergoing treatment and says his doctors and parents have not brought it up since.
Fertility impairment and sexual dysfunction are consequences of many childhood medical conditions and treatments, and can have a negative impact on quality of life. Thus, general pediatricians and subspecialists need to assess risk, offer options for management and provide psychosocial support in this area.
The new AAP clinical report Counseling in Pediatric Populations at Risk for Infertility and/or Sexual Function Concerns describes numerous at-risk populations and offers guidance on how to address these issues. The report, from the Section on Endocrinology, is available at https://doi.org/10.1542/peds.2018-1435 and will be published in the August issue of Pediatrics.
Assessing risk and management options
Many medical conditions (e.g., disorders of sex development) and treatments (chemotherapy and radiation for cancer or non-oncologic conditions, hormonal treatments for transgender youths) may impair future fertility and sexual function. Initial questions for a provider to consider may include:
- Is there a medical or surgical intervention taking place that may affect the patient’s future fertility or sexual function?
- Is there an opportunity now to protect or preserve fertility/sexual function (e.g., cryopreservation of eggs, sperm or reproductive tissue)?
- What type of information can be shared about future fertility and/or sexual function implications?
- Should other medical/behavioral health subspecialists become involved to help address these issues?
Research shows that many at-risk youths remain uncertain, confused and/or distressed about their fertility and sexual function, even well into adulthood. In some cases, the child may have been too young or ill to understand initial discussions or may not have perceived future parenthood as a priority. Other children may begin to envision future parenthood at a young age, yet lack understanding of what their challenges may be. Many parents remain unsure of whether, when and how to initiate these discussions with their children.
All of these issues can impact psychosocial well-being and formation of romantic relationships, and misconceptions can lead to unplanned pregnancy in those who incorrectly assume they are infertile.
Both youths and parents report wanting providers to address these issues.
When possible, an interdisciplinary approach is helpful to incorporate expertise regarding the following:
- the primary medical conditions and treatment plan (with input from oncologist, rheumatologist, geneticist and other treating providers);
- approaches for assessing gonadal function in males and females of different ages and pubertal stages (general and/or reproductive endocrinologist, gynecologist or urologist); and
- strategies to engage the child and family in these discussions accounting for culture, child development and/or developmental limitations, psychosocial considerations (behavioral health professional).
Talking points for the child/family may include: prediction of infertility/sexual function risk; medical-surgical approaches to preserve or improve function; other considerations regarding pregnancy and biological parenthood (i.e., risk to future offspring); and different ways to be a parent. More detailed discussions of body image, intimacy, and sexual health and function should occur with adolescents and young adults.
- Be aware of medical conditions and treatments that can lead to fertility impairment and/or sexual dysfunction.
- Ensure that counseling about treatment-specific fertility and sexual function risks and potential interventions is evidence-based. While some disease-specific guidelines have been established regarding infertility risk, sexual function concerns and interventions, a literature search may be needed for lesser-known conditions.
- Share available information with families to facilitate decision-making. Counseling should begin with parents in infancy or at the earliest time point a patient may be affected.
- Share full information with children about their conditions using developmentally sensitive approaches. Repeat the conversations, as the youth’s comprehension, concerns and perspectives may change over time.
- Work with interdisciplinary teams (including the primary care provider, medical subspecialists and behavioral health providers) to develop a strategy to address issues of fertility and sexual function in a direct but sensitive manner. Allot enough time for questions, and ensure that a consistent message is relayed. Teams should identify which provider will discuss each aspect of the risk and potential intervention and at what time point.
- Document the content and outcomes of discussions to optimize communication among health care providers and facilitate a smooth transition to adult care.
Dr. Nahata, a lead author of the clinical report, is a member of the AAP Section on Endocrinology.