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Oncofertility in Practice: Overcoming Awareness and Accessibility Barriers

Author Taylor Spurgeon-Hess covers Oncofertility in Practice: Overcoming Awareness and Accessibility Barriers on BackTable OBGYN

Taylor Spurgeon-Hess • Jun 24, 2023 • 42 hits

Oncofertility, while a crucial component in comprehensive cancer care, often grapples with awareness and accessibility issues in the healthcare sphere. Dr. Leslie Appiah emphasizes this by spotlighting the need for collaboration across clinicians, scientists, psychosocial experts, and patient stakeholders. The oncofertility patient group has expanded beyond those undergoing cancer treatments, encompassing a diverse range of conditions posing potential threats to fertility. This necessitates prompt and tailored counseling before initiating any fertility-impairing therapy. With the oncofertility network expanding, the incorporation of systematic solutions, such as automated discussions, EHR alerts, and auto-referrals, ensures patients receive timely information and resources, underpinning the significance of fertility preservation in cancer care.

This article features excerpts from the BackTable OBGYN Podcast. We’ve provided the highlight reel in this article, but you can listen to the full podcast below.

The BackTable OBGYN Brief

• Oncofertility integrates multiple disciplines to improve fertility outcomes for cancer patients. Widespread awareness and knowledge about oncofertility among healthcare providers is essential, while stigmatization and lack of insurance coverage for fertility services present major challenges.

• Oncofertility benefits not only cancer patients, but also those with systemic lupus erythematosus, sickle cell anemia, and individuals undergoing gender-affirming procedures.

• Alkylator therapies and radiation pose significant fertility risks. The risk level can vary depending on treatment dose, location, and the patient's age and sex.

• An estimated 15 to 20 oncofertility programs are actively serving both pediatric and adult institutions across the U.S.

• System-based processes can be programmed to routinely prompt physicians to discuss fertility preservation options with patients.

• Healthcare providers are implementing innovative solutions like EHR alerts and automatic referrals to promote comprehensive discussions around fertility preservation. They are embedding these automated alerts and referrals within new patient order sets, thereby increasing patient access to fertility preservation consultations.

• Additional resources, including written materials, decision aids, and online resources, are being developed for patient education to enhance their autonomy and understanding of fertility preservation.

Oncofertility in Practice: Overcoming Awareness and Accessibility Barriers

Table of Contents

(1) Oncofertility Awareness and Accessibility

(2) Counseling Unique Patient Populations About Fertility Risk

(3) Making Oncofertility the Standard of Care: System Solutions & Practice Advancements

Oncofertility Awareness and Accessibility

Dr. Appiah's critical work in oncofertility, a multidisciplinary field dedicated to preserving fertility in cancer patients, highlights the pressing need for greater awareness among healthcare providers. Despite its profound importance, this specialty often remains an unfamiliar discipline in medical practice. It calls for broad-based collaboration, involving clinicians, scientists, psychosocial experts, and patient stakeholders. Oncofertility efforts often face societal and insurance-related challenges, as fertility issues are frequently stigmatized and not recognized as a disease state, which leads to inadequate funding and coverage of fertility treatments. However, recent advancements indicate a shift in these dynamics, with 13 states passing legislation that mandates insurance coverage for fertility services, including fertility preservation. This change underscores the evolving recognition of fertility as an essential aspect of patient care.

[Dr. Leslie Appiah]

A little bit about Oncofertility. Oncofertility is a multidisciplinary field that brings together clinicians, scientists, psychosocial experts, and patient stakeholders to improve fertility and reproductive health outcomes for patients with cancer diagnoses. This is an area that we do want all physicians to be familiar with because it touches primary care providers, specialists, everyone in medicine, and we want our patients to get the best care. The more we can advance knowledge across disciplines, the better it is for our patients.

[Dr. Mark Hoffman]
Well, it certainly doesn't sound simple. I mean, the list of folks you mentioned, and having seen what you are able to do in your time here at the University of Kentucky, it's a heavy lift. It's a big job. It's a lot of work, but you're dealing with one of the most vulnerable populations. Most of the patients you're dealing with or patients with cancer. Not all; most. This is something that in my years as a resident dealing with G1 Oncology in med school, I don't think it was mentioned once to me.

It was not something that came up in conversation, yet when you came and spoke to us about what it is that you do, it seemed like such an important thing that not a bright enough light or no light at all was being shone on it. Is that a sense you get from other places you've been as well where it's like, oh wait, we're not even doing this? Is that a common thing you do along the way?

[Dr. Leslie Appiah]
It is, and it's very common to hear physicians of all stages and degreed levels say that they've never heard of the term Oncofertility. The term was coined by Dr. Teresa Woodruff at Northwestern University in 2009. Teresa Woodruff is an ovarian biologist who really began the journey of preserving the fertility of patients with cancer. Since then, it has been our charge to increase knowledge around Oncofertility. At every institution that I've been employed, it tends to be a very novel idea or a novel discipline for individuals.

It is a huge lift. It takes a lot of heart and compassion and grit and determination and the ability to influence individuals to really take up the charge to care for this patient population. Fertility in this country only recently began to be understood or appreciated as a disease, and it's almost stigmatized to have infertility, and insurance providers don't cover fertility services for patients without cancer. You can imagine the challenge to begin to bring these services to patients who have this chronic illness.

[Dr. Mark Hoffman]
Why do you think that is that infertility is not considered a disease state? Is male infertility covered or not covered? In a way it's the same thing.

[Dr. Leslie Appiah]
I have pondered why infertility is not considered a disease state, whether it's a political reason, a religious reason. When we look at fertility services and fertility practices across religions, why variations in what is acceptable and what isn't in order to preserve fertility or to achieve biological children, I've always wondered if that has a role in it as our society tends to be heavily influenced by religious practices at times. No, infertility is not covered more for males or for females or any particular group. Infertility services across the board are not well funded or not well covered by insurance providers. I will say that that is changing.

There are now 13 states, including Colorado, with legislation that mandates that insurance providers cover fertility services, both for patients with cancer and without. Fertility preservation services for a woman or man who is going to undergo cancer treatments that are going to render them infertile, and then patients who actually meet the medical diagnosis of infertility.

[Dr. Mark Hoffman]
That's interesting. I've lived in states that do and lived in states that do not cover or that do not mandate coverage for infertility. I've never known whether a state that I've lived in had any specific coverage for things like fertility preservation. Is that something that's newer in terms of legislation? Illinois, where I trained, IVF was covered, it was all covered. Michigan, Kentucky was not. Would fertility preservation services be covered underneath that or does that typically take separate legislation?

[Dr. Leslie Appiah]
It typically takes separate legislation. You're very astute there as usual, Mark. In states where infertility services are covered, we have had to go back to the legislatures to add fertility preservation coverage. It's very specific language that needs to be placed into the bill in order to provide those services for individuals.

Listen to the Full Podcast

Oncofertility with Dr. Leslie Appiah on the BackTable OBGYN Podcast)
Ep 22 Oncofertility with Dr. Leslie Appiah
00:00 / 01:04

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Counseling Unique Patient Populations About Fertility Risk

The field of oncofertility initially centered on patients undergoing potentially fertility-impairing cancer treatments, but the patient spectrum requiring fertility preservation has since broadened. We now serve those with a variety of conditions that could risk their fertility, either due to their disease or the therapies administered. This includes patients with systemic lupus erythematosus, patients with sickle cell anemia undergoing bone marrow transplants, individuals about to undergo gender-affirming surgeries or treatments, and those born with infertility-causing genetic conditions like Turner's syndrome or differences in sexual differentiation.

This expansive patient profile underscores the necessity of early and broad-ranging conversations about fertility preservation. Timing is crucial - the best time to discuss fertility preservation is before any potentially damaging treatment begins. However, not all treatments bear the same risk. Some chemotherapeutic agents, particularly alkylator therapies, and specific forms of radiation are the most damaging to fertility. Yet, damage levels can vary based on the treatment dose, location, and patient's age and sex. This diversity in risk makes personalized, informed counseling paramount to a successful oncofertility practice.

[Dr. Mark Hoffman]
Who are the patients that we should be discussing this with?

[Dr. Leslie Appiah]
Thankfully, the type of patient who would benefit from fertility preservation continues to grow. I say thankfully because initially the field was very focused on patients with cancer and that's our base. Patients with cancer, they're receiving highly toxic treatments and their fertility is going to be impaired. Patients with cancer diagnosis have historically been the primary population. However, we are now able to provide fertility preservation services for patients with sickle cell anemia who are undergoing bone marrow transplants, patients with systemic lupus erythematosus who are receiving alkylator therapies, cytoxan cyclophosphamide, transgender populations who are going to undergo gender-affirming surgeries and are receiving gender-affirming treatments are at risk of infertility, and patients born with genetic conditions that result in infertility such as Turner's syndrome, or those with differences in sexual differentiation. All of those patient populations are at risk of infertility, either from their diagnosis or from the treatments that we give them. These patients should be counselled about their options.

[Dr. Mark Hoffman]
You mentioned talking to other physicians and engaging other physicians, and this is a conversation that having worked alongside you, not in this endeavor, but having worked alongside you over the years when you were doing this, understanding that sometimes these conversations happen too late. Having to convince or having to educate people seems to be such a big part of this job. Because if I'm a cancer doctor and someone comes to see me and I'm taking care of the cancer, I don't have that conversation before we treat. We've done the damage. What are the chemotherapeutic agents or what are the treatments that you most commonly see as being the most negatively affecting fertility that have the most harmful impact on fertility?

[Dr. Leslie Appiah]
Before I answer that question, I do want to acknowledge your comment about the education piece. It does require consistent and persistent messaging about the risk of these treatments to fertility. We have a 13-member team at the University of Colorado, which again spans all disciplines. That is required to really ingrain the idea of Oncofertility across the institution, that every department is affected by, whether it's surgery, endocrinology, pediatrics, every physician will encounter a patient who has had a cancer diagnosis or is diagnosed with cancer. It's really important that this becomes a part of our culture, that we address this well for our patients.

Thankfully, not all chemotherapeutic agents will negatively affect fertility. The agents we worry about the most fall under a category called alkylator therapies. These therapies destroy both rapidly dividing cells as well as cells at rest. While these therapies are great for treating the tumor burden, they also destroy healthy tissues such as skin, ovaries, and testicular tissue. The higher the dose of alkylator the more harm. We want to be cognizant about how we counsel patients. We don't want to incite fear and trepidation in all patients because not all chemotherapeutic agents cause the same level of harm. We want to be sure that we message that appropriately. Another treatment that is highly toxic for the gonads is radiation. That is also dose dependent. The more radiation a patient receives, the more harm that may occur. Also, the location. Cranial spinal radiation, total body radiation, pelvic and abdominal radiation, and direct radiation to the groin, that is going to confer a high risk of infertility. Depending on the dose, it may be irreversible. I will say that men, there are many great attributes to being male.

One of the great attributes is that men can produce sperm into their 60s. The cells can regenerate. A young boy who is 15 and experiences a receives chemotherapy may recover their fertility in 5 to 10 years. For females, we're born with all of the eggs we're going to have. If there's injury in adolescence, we're only going to shorten the time to menopause. It's important that we counsel patients about the chemotherapeutic agents and the radiation they're experiencing, what that harm is, and then what we can do to mitigate that harm.

Making Oncofertility the Standard of Care: System Solutions & Practice Advancements

As the network of oncofertility programs continues to grow, establishing streamlined access and robust systems becomes a priority. To ensure that critical conversations about fertility preservation are routine rather than ad hoc, healthcare systems are developing automated processes. These systems prompt physicians to discuss fertility preservation to decrease reliance on memory, making it easier for patients to receive timely information. Furthermore, many centers are implementing innovative solutions such as electronic health record (EHR) alerts and automatic referrals, enhancing both patient and physician engagement in fertility preservation. Coupled with written materials and decision aids for patients, these advances help reinforce the importance of discussing fertility preservation during cancer care, ensuring that patients have the knowledge and resources they need.

[Dr. Mark Hoffman]
No, no, it's something that I think-- I ask how many NCI centers there are. It seems to me that that's where you would want to house a lot of these programs where you have a gathering of cancer patients and cancer experts where that conversation can be taught, where this can be a routine. This is not something that we have to pull strings for. You and I have talked about that and we are working here, certain things were hard every time. Why is this hard every time? This shouldn't be every time.

It's because the systems haven't been put in place. But once systems get put in place you don't have to think about things. Things can be systems-based that get done based on the way it's built, not just remembering to do something. We don't have to rely on our imperfect human brains. How many programs are there doing what you guys are doing, and not even necessarily to the level you're doing, but how many would you say true Oncofertility programs are out there across the country?

[Dr. Leslie Appiah]
I would say across the country intimately that I know probably 15 to 20 across the country, which isn't bad. That includes pediatric and adult institutions. I could probably start rallying them off of my fingers here.

[Dr. Mark Hoffman]
Some are adult only, some are adult and kids.

[Dr. Leslie Appiah]
Correct. Some are adult and kids. Yes.

[Dr. Mark Hoffman]
[unintelligible 00:41:47], is that a part of it, or depends on where the--

[Dr. Leslie Appiah]
[unintelligible 00:41:51] adolescent gynecology providers tend to lead a lot of the fertility preservation programs, interestingly enough. I think that's because we are adult-trained first and then pediatric and adolescent-trained second, and so we bridge both sides. We're able to take care of adults and children. We have the knowledge on both sides and so it makes us uniquely suited for this role. We take the role seriously and we're passionate about it and we love it and we're bringing more people into the fold every day. I want to comment on something you said about the comprehensive cancer centers.



[Dr. Mark Hoffman]
Educating doctors is one thing. I imagine educating patients is a different challenge. I think like everything in healthcare, there's likely a few Reddit posts out there or Facebook groups that are doing this, but, unfortunately, it would seem that for Oncofertility, as you've already alluded to or spoken about, this is something that's really timely. You're in the hospital, you've got this diagnosis, your brain is not thinking about much but life and death, I would imagine. To rely on patient education, I would think it would be something people might find out more often than not after the fact. Is there a big patient education part of what you do? I would think it would mostly have to come from the doctor's side.

[Dr. Leslie Appiah]
I would say that we do spend most of our energies educating the physicians to make sure they make the patients aware. Then it's really important that we have written materials for the patients to have as well as audiovisual materials. Developing decision aids, giving them links to sites that really talk about fertility preservation is really important. My dream is that every patient who has a cancer diagnosis will automatically receive something through their EMR MyChart that says, you've been diagnosed with cancer. This is what you need to know about your fertility. These are links, these are resources. We really have to bypass physicians because we have our biases, we have our beliefs, so sometimes we don't always do the right thing for our patients despite what we feel about ourselves.

[Dr. Mark Hoffman]
With our best intentions, we forget.

[Dr. Leslie Appiah]
We forget. It's very busy. Cancer diagnosis, there's so much information coming to a patient. If they can just receive something that says this is an alert, here are the resources, or please ask these questions of your oncology provider, I think that that would do wonders.

[Dr. Mark Hoffman]
Or have an alert to the doc when you're prescribing a chemotherapeutic agent or a-

[Dr. Leslie Appiah]
I'm glad you mentioned that.

[Dr. Mark Hoffman]
-toxic agent. Hey, Dr. So-and-so, have you spoken to your patient about their fertility? [laughs]

[Dr. Leslie Appiah]
We have that. We have that. It's called--

[Dr. Mark Hoffman]
Do you?

[Dr. Leslie Appiah]
Yes. It's a best practice advisory. It comes up as soon as a patient has a treatment plan or when we're trying to decide when's the best time. Treatment plan seems a little bit too late, but the diagnosis comes up or we have a pathologic report, and it says, "Physician, your patient was diagnosed with this malignancy. Have you counselled them, or have you offered fertility preservation counselling?" If yes, then you are done. If no, it asks for a reason why not. Then it actually--

[Dr. Mark Hoffman]
Does a little person come up with their arms crossed saying, "Why not?"

[Dr. Leslie Appiah]
Why not? Are they too sick? Did they decline? What are the reasons? Then there's an automatic option for the referral. It's embedded also in the new--

[Dr. Mark Hoffman]
So you can just click the referral right from there?

[Dr. Leslie Appiah]
Yes.

[Dr. Mark Hoffman]
That's a system solution. That's awesome.

[Dr. Leslie Appiah]
It's awesome, yes. We have it also in the new patient order set. It just says, "Do you automatically default to social work?" It's automatically defaulted for fertility preservation consult and it is up to the physician to deselect, that's called opt-out. It has been shown to be most effective for any number of alerts. This is happening in centers and it's really changing the way.

Podcast Contributors

Dr. Leslie Appiah discusses Oncofertility on the BackTable 22 Podcast

Dr. Leslie Appiah

Dr. Leslie Appiah is the director of the fertility preservation program and the chief of the division of academic specialists in OBGYN at the University of Colorado Anschutz.

Dr. Amy Park discusses Oncofertility on the BackTable 22 Podcast

Dr. Amy Park

Dr. Amy Park is the Section Head of Female Pelvic Medicine & Reconstructive Surgery at the Cleveland Clinic, and a co-host of the BackTable OBGYN Podcast.

Dr. Mark Hoffman discusses Oncofertility on the BackTable 22 Podcast

Dr. Mark Hoffman

Dr. Mark Hoffman is a minimally invasive gynecologic surgeon at the University of Kentucky.

Cite This Podcast

BackTable, LLC (Producer). (2023, May 4). Ep. 22 – Oncofertility [Audio podcast]. Retrieved from https://www.backtable.com

Disclaimer: The Materials available on BackTable.com are for informational and educational purposes only and are not a substitute for the professional judgment of a healthcare professional in diagnosing and treating patients. The opinions expressed by participants of the BackTable Podcast belong solely to the participants, and do not necessarily reflect the views of BackTable.

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