Conversations with family should be early and ongoing, according to clinical report -- the first of its kind by AAP
When a child's medical condition or treatment might affect sexual function or fertility in later years, physicians and other members of an interdisciplinary team such as behavioral health professionals are urged to begin a series of ongoing conversations with the patient and family rather than avoid this sensitive, often overlooked topic.
That is the message from the American Academy of Pediatrics, which offers guidance for physicians and families in its first clinical report on the topic, "Counseling in Pediatric Populations at Risk for Infertility and/or Sexual Function Concerns."
The report, to be published in the August 2018 issue of Pediatrics, offers recommendations on how to have developmentally appropriate conversations with young patients about their future reproductive options and sexual function - and why it's important to start early.
"We want children to feel safe asking questions, as a lack of information can lead to inaccurate beliefs or distress over time, through young adulthood," said Leena Nahata, MD, FAAP, lead author of the clinical report. "Early on, in some situations, there may also be opportunities to preserve a patient's future fertility or sexual function that can be addressed."
Many medical conditions that occur in childhood or adolescence can lead to fertility impairment and sexual function challenges, including genetic conditions and differences of sex development. Infertility and sexual dysfunction may also be the result of treatments such as surgery, radiation, chemotherapy, and some hormonal interventions.
The AAP recommends:
Counseling about fertility and sexual function is essential and should begin with parents as early as infancy, or the earliest point a patient may be affected.
All children should have access to full information about their conditions, using developmentally sensitive approaches as they mature.
Treatments for fertility and sexual function, when available, should be evidence-based; when evidence is unavailable, families should be informed about the potential/unknown risks with a plan for ongoing assessment and counseling.
An interdisciplinary team-based approach works best in developing a strategy to discuss fertility and sexual function with families. Medical and behavioral health providers should make sure to allow enough time for the conversations and make sure to provide consistent messages.
"Parents might prefer to start the discussions at home with younger children, and physicians and behavioral health counselors can provide guidance on the best approach," said Dr. Nahata, a member of the Academy's Section on Endocrinology. "For instance, you might tell children that, 'There are many different ways to become a parent and have a family,' or ask them how they feel about their bodies."
Teenagers may feel more comfortable talking to health care providers than their parents, according to the AAP. Ideally, counseling should take place with parents present and with the youth alone.
"Adolescents may have concerns about pregnancy or need information on contraception to avoid sexually transmitted diseases," said co-author Gwendolyn P. Quinn, PhD, professor in the Departments of Obstetrics and Gynecology and Population Health at NYU Langone Health.
Counseling patients and families helps them cope with the uncertainties and stress that come along with medical conditions and prepares them when issues arise that are unknown and unpredictable. Youth should feel free to ask about issues that concern them, especially as they mature into late adolescence and young adulthood and may have increasing questions about sexual issues and parenting goals.
"Children have a right to information about their medical conditions and functioning in all areas, and we should create a climate that fosters communication, said co-author Amy C. Tishelman, PhD, director of clinical research in DSD-GeMS at Boston Children's Hospital and assistant professor at Harvard Medical School. "By having ongoing discussions, we are more likely to establish a sense of safety and trust, while helping youth and family make informed decisions."
Additional Information from HealthyChildren.org: