As childhood cancer survival rates improve, an increasing number of survivors are dealing with late effects such as infertility. Fertility counseling has increasingly become part of the standard of care for children newly diagnosed with cancer, but developing a program that can actually provide fertility preservation options to all of those patients remains difficult.
The Pediatric Initiative Network of the international Oncofertility Consortium – comprised of providers who have had their own, sometimes challenging experiences developing preservation programs – has now created a guide to help.
“There are certainly more of these programs than there were a decade ago, but we still see many people who are interested in starting a program but are experiencing barriers,” says Leena Nahata, MD, medical director of the Fertility and Reproductive Health Program at Nationwide Children’s Hospital and chair of the Pediatric Initiative Network. “With this publication, we are offering those people some guidance based on current literature and our own experiences. We are also giving them concrete evidence of the important components of a program, which will enable them to better make a case for one at their own institutions.”
Dr. Nahata, who is an endocrinologist and principal investigator in the Center for Biobehavioral Health at Nationwide Children’s, is senior author of the paper, published in the Journal of Adolescent Health.
A fertility program must operate under extreme time pressure, and that often dictates how a program is structured, say the authors. A child newly diagnosed with cancer may have 48 hours or less before oncological treatment begins. That’s a two-day window for counseling a family about infertility risk, preservation options and financial considerations; reviewing consent documents for experimental procedures; possibly performing a surgical procedure to cryopreserve sperm (if a sample cannot be produced), oocytes, ovarian tissue or testicular tissue; and coordinating all of these procedures with a facility that will store the biological material.
It’s often not feasible to accomplish all of that unless a program director has already created relationships with providers in oncology, urology, gynecology/surgery, psychology, reproductive endocrinology in addition to developing a partnership with a banking facility. It is most efficient when a full time fertility navigator can help coordinate the many steps for individual children and families.
Dr. Nahata and her colleagues also point out that while fertility preservation research and guidelines are most advanced in the cancer field, many other patient populations need access to fertility services as well.
“One person can start a fertility program, but the institution has to support it and provide adequate resources, and many people are needed to make it successful,” says Dr. Nahata.
Moravek MB, Appiah LC, Anazodo A, Burns KC, Gomez-Lobo V, Hoefgen HR, Jaworek Frias O, Laronda MM, Levine J, Meacham LR, Pavone ME, Quinn GP, Rowell EE, Strine AC, Woodruff TK, Nahata L. Development of a pediatric fertility preservation program: a report from the Pediatric Initiative Network of the Oncofertility Consortium. Journal of Adolescent Health. 2019 Jan 14. [Epub ahead of print]