COLUMBUS, Ohio; TAMPA, Fla. and BOSTON — 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.”
About Moffitt Cancer Center
Moffitt is dedicated to one lifesaving mission: to contribute to the prevention and cure of cancer. One of the three largest cancer centers in the United States based on patient volume, the Tampa-based facility is one of only 45 National Cancer Institute-designated Comprehensive Cancer Centers, a distinction that recognizes Moffitt’s excellence in research, its contributions to clinical trials, prevention and cancer control. Moffitt is the top-ranked cancer hospital in Florida and has been listed in U.S. News & World Report as one of the “Best Hospitals” for cancer care since 1999. Moffitt devotes more than 2 million square feet to research and patient care. With more than 5,000 team members, Moffitt has an economic impact in the state of $1.9 billion. For more information, call 1-888-MOFFITT (1-888-663-3488), visit MOFFITT.org, and follow the Moffitt momentum on Facebook, Twitter and YouTube.
About Nationwide Children’s Hospital
Ranked 9th of only 12 children’s hospitals on U.S. News & World Report’s 2015-16 “America’s Best Children’s Hospitals Honor Roll,” Nationwide Children’s Hospital is one of the nation’s largest not-for-profit freestanding pediatric healthcare networks providing wellness, preventive, diagnostic, treatment and rehabilitative care for infants, children and adolescents, as well as adult patients with congenital disease. Nationwide Children’s has a medical staff of 1,100 and nearly 10,000 employees providing state-of-the-art pediatric care for one million patient visits annually. As home to the Department of Pediatrics of The Ohio State University College of Medicine, Nationwide Children’s physicians train the next generation of pediatricians and pediatric specialists. The Research Institute at Nationwide Children’s Hospital is one of the Top 10 National Institutes of Health-funded freestanding pediatric research facilities. Nationwide Children’s remains true to the original mission since its founding in 1892 of providing care regardless of a family’s ability to pay. More information is available at NationwideChildrens.org.
About Boston Children’s Hospital
Boston Children’s Hospital is home to the world’s largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 1,100 scientists, including seven members of the National Academy of Sciences, 11 members of the Institute of Medicine and 10 members of the Howard Hughes Medical Institute comprise Boston Children’s research community. Founded as a 20-bed hospital for children, Boston Children’s today is a 404-bed comprehensive center for pediatric and adolescent health care. Boston Children’s is also the pediatric teaching affiliate of Harvard Medical School. For more, visit our Vector and Thriving blogs and follow us on our social media channels:@BostonChildrens, @BCH_Innovation, Facebook and YouTube.