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The future of fertility
The Fertility Navigation program provides an important service for patients
When pediatric cancer patients start their treatment journey, there are a lot of questions. One important question isn’t always top of mind: What does cancer treatment mean for a child’s future ability to have their own biological children?
Addressing fertility at the beginning of a patient’s treatment is not only a recommended best practice for pediatric cancer programs, but it also helps patients and families feel some modicum of control over a situation that is often beyond their control. Children’s Wisconsin’s MACC Fund Center for Cancer and Blood Disorders created its Fertility Navigation program in 2019 to ensure that patients receive the fertility support they need.
“We identified two needs,” explains Kerri Becktell, MD, pediatric oncologist at Children’s. “First, fertility coordination is becoming more complicated, but in a good way, because there are more options. It’s very important for current patients to understand what risks they may face. The other need is to support patients who weren’t offered these services when they were diagnosed and now as survivors need to be educated on their options. We felt the best way to do this was to have a dedicated fertility team.”
Building a successful program
Katy Tomlinson, BSN, RN, a clinical research nurse and performance improvement specialist, is Children’s first dedicated fertility navigator. Tomlinson and her colleagues at Children’s developed their program by looking at best practices from other successful programs across the country, as well as their own experience.
“We’ve learned from research and from our survivors that it’s sometimes a difficult topic to talk about,” Tomlinson says. “Facing a diagnosis that requires treatment like chemotherapy, radiation, surgery or bone marrow transplant is stressful. Patients are also under time pressure, and it’s emotionally overwhelming. That’s why this is such an important touchpoint at the beginning, as well as at any time of significant transition with treatment plans. When we’re doing a consult, we take into account the patient’s age, stage of development, what their treatment is, how sick they are, and many other factors.”
Tomlinson has already seen how having these discussions can impact patients’ experiences. “Families have been appreciative of the information,” she says. “It can be delivered within a hopeful framework, because the goal is to cure children of cancer and have that hope for the future. That is an important component.”
Exploring new options
With continuing research into fertility and egg and sperm preservation, the options for pediatric patients are increasing.
Children’s is participating in several studies that support pediatric fertility research. Currently, Children’s patients can participate in an ovarian cryopreservation study for which we are collaborating with Lurie Children’s Hospital of Chicago. Children’s is also studying testicular tissue cryopreservation.
“The testicular tissue cryopreservation study is something we offer through our urology department that isn’t offered everywhere,” says Rachel Phelan, MD, pediatric bone marrow transplant specialist at Children’s. “And novel studies and treatment options are definitely something we’re looking to expand on. The data from this study will help us identify potential barriers to the process for this study and future studies that we need to address.”
Listening to patients and the medical community
The fertility navigation team is also performing internal research, using patient surveys to understand how well they are communicating information to patients and how they can improve. The program has already been successful due to a number of factors.
“I think our program is doing well because we have really made it a point to build relationships across disciplines,” Dr. Becktell says. “Buy-in is important, and when we presented our case to the team, we made the case using data — for example, for many patients, fertility is the No. 1 thing they regret having not talked about before treatment. I also think a key reason this was successful is having Katy as a dedicated navigator.”
Tomlinson also credits success to the growing onco-fertility medical community: “We had a wonderful experience not only collaborating with our colleagues at Children’s, but also nationally with other onco-fertility programs,” she says. “People are very eager and generous in sharing program building tips and experience. There is really a great network of people dedicated to filling this gap.”
And while filling the gap has become a little more difficult with the restrictions put in place due to the coronavirus pandemic, Tomlinson and her colleagues have been able to keep up with the need by taking advantage of telehealth and videoconferencing. “It’s been critical to keep this program moving,” Dr. Phelan says. “We just needed to navigate a new way of doing things and the team has worked well, continuing to make it happen.”
To refer a patient to the MACC Fund Center for Cancer and Blood Disorders, call (877) 607-5280.