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Perspectives from the 7th annual Oncofertility Conference

Screen shot 2013-09-26 at 3.04.58 PMOncofertility is a multidisciplinary field of experts coming together to provide fertility options to cancer patients.  The multidisciplinary nature of the field was on display during our 7th annual Oncofertility Conference in Chicago, Illinois.  During the course of the conference, we saw presentations from international scientists, Northwestern program leaders, social workers, surgeons and reproductive endocrinologists (to name a few). In addition to the powerhouse lineup of speakers, conference attendees were able to interact amongst themselves to foster collaborations to begin, or strengthen, their individual fertility preservation programs.  The audience was just as diverse with cancer survivors, high school students, patient advocates and navigators, lab scientists, physicians and community leaders coming together to share stories and gather data to better serve their patients at home.  They also had the opportunity to attend our largest poster session to date with 50 scientific posters from around the world demonstrating current advances in oncofertility.

As the new research project coordinator for the National Physicians Cooperative (NPC) of the Oncofertility Consortium, I considered the conference my initiation into the oncofertility community.  During my first few weeks at Northwestern, while being oriented to a new field at a new institution, I spent a large part of my day reviewing scientific papers, watching Virtual Grand Rounds, and thumbing through book chapters to try and grasp the intricacies of oncofertility.  While that process gave me a fairly comprehensive understanding of the mechanisms behind fertility preservation issues in current cancer patients and survivors, the true importance of the work being done by the Oncofertility Consortium really hit home when I had a chance to speak with conference attendees.

I spoke with cancer survivors on what these fertility preservation measures mean to them and their future reproductive options.  I chatted with patient advocates and nurses about the issues that patients discuss with them on a daily basis and then viewed presentations from respected leaders on methods and techniques to address those issues.  I met national NPC leaders who discussed current protocols and clinical standards before brainstorming ways to improve the standards and create solutions for roadblocks.

While members of the Oncofertility Consortium, and the broader oncofertility community, come from different backgrounds and geographical locations, we are working towards a shared goal of expanding fertility options for cancer patients and survivors.  I look forward to establishing my role in the National Physicians Cooperative of the Oncofertility Consortium and collaborating with members across the country.

I invite you to view the 7th annual Oncofertility Conference here:  2013 Oncofertility Conference

New Fertility and Cancer Study from Oncofertility Consortium Member, Jennifer Mersereau, MD

Advances in cancer treatments give young women more hope for survival than ever before, but many treatments can leave women unable to naturally conceive a child.  The University of North Carolina (UNC) Fertility Preservation Program, a member of the National Physicians Cooperative, provides options for female patients of reproductive age newly diagnosed with cancer, but the decision to initiate fertility preservation must be made quickly, before cancer treatment begins.  General lack of knowledge about reproductive functioning, stress related to processing the cancer diagnosis, urgency, and insufficient support while attempting to make the decision, all serve to degrade this process often leading to later decisional regret.

As a result, Oncofertility Consortium member, Dr. Jennifer Mersereau, and UNC Fertility are conducting a multidisciplinary research study that evaluates a ‘Decision-Aid” designed to help reproductive-aged women (age 18-42) make decisions about fertility and cancer. This collaborative project between a reproductive endocrinologist, clinical psychologist, and oncology experts involves a new interactive, web-based decision aid that is used in concert with fertility preservation counseling.  If this decision aid proves to be beneficial, this web-based tool may potentially be used for patients who do not have easy access for a full fertility preservation consultation.

Study Details:

  • Study participants will have a routine consultation appointment with a fertility specialist at UNC Fertility to discuss fertility, cancer, and treatment options for fertility preservation. Note that this visit is considered part of routine medical care.
  • Participants will plan for an additional 45-60 minutes at the time of their consultation to watch a web-based presentation about fertility preservation and decision-making.  They will also complete questionnaires at that time.
  • Participants will be asked to complete 2 additional web-based surveys, one approximately one week after the consultation, and one approximately 6 months later.

Findings from this pilot evaluation will support a grant application for a multi-site study to investigate community effectiveness and accessibility. Study participants will receive a $50 gift card for full participation, to compensate for their time and effort. If you are in the Chapel Hill area and interested in taking part in this study, please call for a consultation appointment (919-966-1150) or send an email to jem *at* unc.edu with your name, phone number and times that you can be reached. Your contact information will not be shared with anyone outside the study. For more information about this study, please click here.

*Supported by a grant from the UNC Lineberger Cancer Center.

Fertility Preservation across the Pond: Global Oncofertility

The medical community has known for a very long time that chemotherapy is disruptive to reproductive function and that young women undergoing chemotherapy have a greater chance of entering early menopause. In the 1970s, two articles were published acknowledging these two issues: Depletion of Growing Follicles and Premature Menopause, indicating a growing awareness among the scientific community that fertility preservation needed to be addressed. Since then, we have seen a steady increase in fertility preservation programs across the United States and the world.

Over the last 30 years in the United Kingdom, the survival rate for young adults with cancer has increased dramatically resulting in the current statistic that 70% of young people with cancer will survive 5 years or more after their last treatment.  In addition to that, the incidence of pediatric cancer has increased, requiring a closer examination of fertility impairments as a result of cancer treatment as well as preventative measures that can be performed prior to treatment to protect reproductive function. Over the last 10 years, publications in the UK addressing fertility preservation have more than doubled demonstrating a growing interest in this sub specialty, oncofertility.

A recent visitor to the Oncofertility Consortium, Dr. Richard Anderson, Professor of Clinical Reproductive Science at the University of Edinburgh, spoke at the Oncofertility  Virtual Grand Rounds yesterday and discussed how the fertility preservation program at the Queens Medical Research Institute is administered. Similar to the Oncofertility Consortium, Dr. Anderson states that good colleagues from diverse backgrounds are needed to ensure that a program runs smoothly. A set of criteria is also needed to determine which individuals are good candidates for fertility preservation. This is especially important in Scotland, where the resources (i.e., number of fertility treatments available) are limited by the federal health system. A functioning registry, which requires an effort from both the provider and the patient, is required to keep the links of communication open to ensure that the tissue is being properly handled.

Currently, the fertility preservation program in the United Kingdom does not have an organization similar to the National Physicians Cooperative, which Dr. Anderson argued would only benefit the success of the program going forward.  Through his visit we were able to share our experiences in this burgeoning field and gain insights into how we can work together on this intractable problem in an effort to address fertility preservation globally. A video of Dr. Anderson’s presentation entitled, “Fertility Perseveration: Where We Are, and How We Got Here,” is available now.

 

Fertility Preservation Then, Now and Going Forward

On May 16th, Richard Anderson, PhD, MD will be delivering an Oncofertility Virtual Grand Rounds entitled, “Female Fertility Preservation in Practice: Where We Are, and How We Got Here.” Dr. Anderson is a consultant at the Royal Infirmary of Edinburgh and a Professor of Clinical Reproductive Science at the University of Edinburgh. He specializes in infertility and reproductive endocrinology with particular interests in disorders of ovulation in women and male reproductive function. His presentation is a highly anticipated event at the Consortium and asks us to reflect on the impact the Oncofertility Consortium has had on fertility preservation in cancer patients over the last five years.

One of the many important resources provided by the Oncofertility Consortium is the National Physicians Cooperative (NPC): a nationwide network of Fertility Preservation sites that are strongly aligned with cancer centers serving children, men and women. The NPC was built to teach fertility specialists about the specific needs of cancer patients. These needs include an immediate need for fertility preservation in a short amount of time, patients that include adolescents and children, and treating individuals who may experience fertility complications from the cancer itself or due to treatment.  NPC sites are trained to provide individualized consultations and interventions for fertility preservation options. They also advance clinical care by participating in multicenter studies designed to improve fertility preservation methods and care delivery. When patients choose ovarian tissue banking at NPC sites, they can also contribute small portions of human ovarian tissue to a national ovarian tissue repository, providing an important resource for translational research that to develop new fertility preservation techniques for cancer patients. While the Consortium originally aimed to establish 4 NPC centers throughout the United States, today, patients can be referred to one of over 55 sites. Based on individual site reporting, the NPC provides more than 2,700 oncofertility consultations per year, showing the significant need for this growing team.

Another important resource the Oncofertility Consortium provides is the Fertline: a National Fertility Preservation phone line (1.866.708.3378 (FERT)). The Fertline was established to meet the needs of NPC patients and providers whereby they can call or contact us via our website (http://myoncofertilty.org) and receive personalized responses depending on their specific cancer and the resources available. Patients are triaged as appropriate for consultation and fertility preservation treatments in their own locale. The Patient Navigator is responsible for taking these calls and helping patients across the country navigate through treatment. On average, our Patient Navigator consults with approximately 30 newly diagnosed cancer patients, primarily women, each month.

To learn more about fertility preservation and oncofertility then, now and going forward, please watch Dr. Richard Anderson’s Oncofertility Virtual Grand Rounds, May 16th at 10am Central Standard Time.

Oncofertility from the Perspective of a Physician

Addressing fertility preservation with a newly diagnosed cancer patient may seem like a daunting task for a healthcare provider, but studies show that cancer survivors who did not learn about fertility preservation options were more likely to feel distressed by this, impacting their quality of life. Whether or not an individual pursues fertility preservation, patients want to know what their options are so they can make an informed decision regarding their future fertility. So why do many healthcare providers fail to discuss fertility preservation with their patients after diagnosis?

Many physicians face communication challenges when discussing fertility preservation with their patients. These barriers can be related to either a physician’s own personality or relationship with the patient, but oftentimes it stems from a lack of knowledge about fertility preservation options and referral sources. Although male fertility preservation is pretty straightforward, female fertility preservation isn’t. This is a particular problem with emerging technologies that are still experimental as a healthcare provider may not know all the available options well enough to comfortably speak about them with patients.

Physicians also struggle with discussing fertility preservation with patients that have low health literacy, patients from cultures or religions that do not support assisted reproduction or patients who do not speak English.  Patient and provider interactions are already complex, but these factors make the conversation particularly challenging. In the event of a non-native speaker, even when an interpreter is used, it’s unclear what is “lost in translation” between patient and provider and how much has been effectively communicated.

Finally, one of the most delicate issues a physician faces is broaching fertility preservation with a patient who has a poor prognosis or is in the late stages of cancer. Healthcare providers have expressed their discomfort with telling a patient they have a low survival rate and broaching fertility preservation in the same conversation. The dynamic involved with giving someone a grim diagnosis and then changing gears and asking them whether or not they’ve ever thought about having children, is complicated in the best case scenario.

These are only a few examples of the challenges physicians face when discussing fertility preservation with a patient. Other factors include the age of the patient at the time of diagnosis and a physician’s attitude toward delaying treatment, particularly in the case of female patients. Understanding these challenges is important to overcoming them.  The Oncofertility Consortium identifies such barriers, works to find solutions, and then promotes those solutions to the clinical community through the National Physicians Cooperative.  To learn more about this topic, please read “Healthcare Provider Perspectives on Fertility Preservation for Cancer Patients,” by Gwendolyn P. Quinn, PhD and Caprice A. Knapp, PhD in Oncofertility: Ethical, Legal, Social, and Medical Perspectives.

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