With ever-improving outcomes for pediatric cancer patients, quality-of-life care, including fertility preservation, has become a priority for cancer centers nationwide – but there are many challenges. From the time of diagnosis, there is typically only a few days to attempt fertility preservation before cancer treatment begins. Streamlined multidisciplinary care is essential but hard to coordinate. And fertility counseling needs to be incorporated into survivorship care whenever possible.
Pediatric Oncologist Ksenya Shliakhtsitsava, M.D., has spent the past several years taking on these challenges by building a formalized oncofertility program at Children's Medical Center Dallas, part of the Children’s Health℠ system. The program brings fertility preservation to the forefront of conversations with patients from the time of diagnosis through survivorship.
“Our hope is that our patients live for many decades, and we want to help them reach their full potential after cancer treatment. That includes having the option to start a family, if they choose,” says Dr. Shliakhtsitsava, who also serves as Assistant Professor at UT Southwestern. “That’s why we’ve built a dedicated multidisciplinary team and standardized protocols that enable us to provide effective oncofertility care.”
Building a multidisciplinary team dedicated to oncofertility
Oncofertility involves a range of specialties including pediatric oncologists, reproductive endocrinologists, pathologists, urologists, gynecologists, surgeons and anesthesiologists. Support services from nurse educators and social workers are also essential.
“With this large team, we needed a systematic approach that helps us coordinate together to best serve each patient,” Dr. Shliakhtsitsava says. “One of our first steps was identifying champions in each specialty who were passionate about oncofertility care.”
These champions became dedicated team members who are readily available to provide expertise, counseling and treatment. They’ve also spent years collaborating on solutions to oncofertility’s long-standing challenges.
Led by Dr. Shliakhtsitsava, one of the team's first priorities was to make fertility risk part of the discussion at the time of diagnosis for every patient.
Standardizing risk assessment for treatment-related infertility
The team adopted The Pediatric Initiative Network Risk Stratification System, published in 2020, to calculate estimated infertility risk based on each patient’s treatment plan. Patients are stratified in three categories: minimally increased risk, significantly increased risk and high risk.
“It’s impossible to be 100% precise when estimating risk of treatment-related gonadal insufficiency and infertility in childhood cancer survivors,” Dr. Shliakhtsitsava explains. “There’s always a chance that a patient may be more sensitive to medications than the average range or naturally become pregnant despite exposure to very high doses of gonadotoxic medications. But thus far, this is one of the tools we have available in the clinical setting. It’s also fairly easy to use.”
This tool became part of training for Children’s Health oncologists, fellows, nurse educators and other advanced practice providers to ensure the team was calculating risk and communicating to patients in a standardized way. The team also began documenting infertility risk in medical records at the time of diagnosis to make fertility preservation part of the treatment plan from the beginning.
Providing counseling and support to patients when they need it
After testing confirms a cancer diagnosis, the oncological care team holds a treatment conference with patients and their families. The team discusses the diagnosis, treatment recommendations and the potential risks and benefits of the proposed therapy, including the level of infertility risk. If there is high risk of infertility, the treating oncologist shares the option of a fertility preservation consultation.
“We offer the consultation to patients even with a very low infertility risk,” Dr. Shliakhtsitsava says. “We find that many patients and families are researching how different cancer treatments can affect fertility. They often have questions and concerns that they may have been too overwhelmed to ask at the treatment conference. Providing individualized counseling, support and reassurance at that time is critical. ”
Unfortunately, coming to the clinic for a consultation isn’t always an option. Patients may be admitted to the hospital, emergently need oncological treatment or their families may not be available on clinic days. As a solution, the team adopted telemedicine for fertility preservation consultations.
In the consultation, Dr. Shliakhtsitsava and a reproductive endocrinologist review the infertility risk level with the patient and/or family. Then they present fertility preservation options based on their risk level, gender, age, pubertal development and family preferences, while weighing risks and benefits.
“I always ask patients, ‘Have you thought about having kids one day?’ And most kids actually have an idea that they may or may not want to be a parent. Even young kids sometimes talk about having a family. Their ideas may change as they go through life, but this question is helpful to guide the conversation on their options,” Dr. Shliakhtsitsava says.
Children’s Health offers the full spectrum of fertility preservation options. For post-pubescent boys, sperm banking is the standard of care. For younger boys, experimental options, such as testicular tissue biopsy and cryopreservation, are also available through IRB approved research study.
For female patients, standard of care options such as ovarian stimulation with subsequent oocyte retrieval, egg or embryo freezing and ovarian tissue banking, are available depending on maturity. The experimental option of using gonadotropin-releasing hormone agonist is also available to appropriate patients.
After the consultation, oncological nurse educators are available as needed to re-review any aspects of fertility preservation with patients and their families. Psychologists and child life specialists can help patients cope with stress and feel as comfortable as possible about their fertility preservation decision and process. Social workers also help patients navigate treatment logistics. If the patient and their family select an experimental therapy, research coordinators help enroll them in the study.
Incorporating fertility in the survivorship continuum
The After Cancer Experience (ACE) Program at Children’s Health/UT Southwestern has been leading the way in pediatric survivorship for more than 30 years.
Dr. Shliakhtsitsava, who is part of the ACE team, says, “We’ve incorporated fertility into the survivorship program to circle back to the infertility risk discussion. This enables us to provide ongoing support to patients, including monitoring their puberty milestones and reproductive health, and having age-appropriate discussion on reproductive health.”
For older adolescent boys, this follow-up care can include assessing the health of their sperm to determine fertility and whether sample storage is still necessary if they underwent fertility preservation. Assessing fertility is more complex for girls, but the team monitors how they’re progressing through puberty and have regular menstruation or if they need to be referred to endocrinology or reproductive specialist to further evaluate ovarian function.
The Children’s Health team also provides older adolescents with sexual health and contraception information when appropriate.
When patients age out of the pediatric program, they transition to UT Southwestern to continue receiving comprehensive survivorship care for their unique needs, including reproductive health.
“As a leader in the field, our responsibility is not only to provide excellent oncological treatments and supportive care during therapy, but to also take full responsibility for the potential short-term and long-term side effects. That includes reproductive health related issues,” Dr. Shliakhtsitsava says. “It’s so gratifying to support patients through this part of their journey and hopefully help them to have a brighter future beyond cancer, with the opportunity to start a family.”