What is Shared Decision Making?

Screen Shot 2014-02-11 at 2.24.57 PMOncofertility Communication: Sharing Information and Building Bridges across Disciplines is divided into two parts.  Part I is Communicating with Patients and Their Families and outlined in Chapters 1-10.  Part II, Communicating with Healthcare Professionals, Stakeholders and the Public starts with Chapter 11, An Interprofessional Approach to Shared Decision Making: What it Means and Where Next.  The authors France Légaré and Dawn Stacey delve into the intricacies of an interprofessional healthcare team approach and what it means for patients who wish to be engaged in the decision making process.

An interprofessional approach is a process by which two or more professionals collaborate to provide integrated and cohesive care to address the needs of their patient population.  It has the potential to link multiple professionals (physicians, nurses, social workers, physical therapists, etc.) with patients and families and help eliminate communication and information gaps in the healthcare system.  Oncofertility is a field whose success relies heavily on interprofessional decision making.  Oncologists, reproductive endocrinologists, nurses, and psychologists work together to provide quality care in a timely manner.  While many advances have been made,  clinical decision-making processes still need to be improved to involve patients and their wishes within the framework.  Additionally, more work needs to be done to identify and implement conceptual models underlying interprofessional approaches to shared decision making and those already in place need to be validated in clinical settings.

The Oncofertility Consortium is a prime example of how interprofessional approaches can successfully drive patient care.  Our Fertility Preservation Patient Navigator helps to bridge the gap between clinicians and patients in a way that allows patients to feel empowered and involved in the decision making process!

Perspectives on Fertility

978-1-4614-8234-5 (1)Oncofertility Communication: Sharing Information and Building Relationships across Disciplines devoted an entire chapter to the communication strategies and issues faced by oncology providers.  Chapter 10 is entitled Fertility Communication to Cancer Patients: A Hematologist-Oncologist’s Perspective and is authored by Sara Barnato Giordano.  As cancer treatments have advanced, the percentage of survivors continue to grow.  Today, approximately 80% of adolescents and young adults given a cancer diagnosis will survive and be faced with a new set of challenges as long-term survivors.  Many studies have shown that young women have a number of concerns related to sexual health, infertility and menopausal symptoms and there is significant room for improvement in communication and counseling in this patient group.

The American Society of Clinical Oncology (ASCO) released guidelines in 2006 that suggested that oncologists should address the possibility of infertility with patients treated during their reproductive years and be prepared to discuss possible fertility preservation options.  They followed up these guidelines with a program, Quality Oncology Practice Initiative (QOPI) that established age-based parameters to provide guidance to oncologists when selecting available fertility preservation options to discuss with patients.  Surveys have indicated that oncologists are often wary of referring patients for fertility preservation consultation for fear of delaying treatment too long or assuming that their patients would not be interested in discussing fertility.  The ASCO guidelines were meant to be an impetus for implementing stronger fertility preservation programs but significant barriers still exist.

The author describes categories of barriers: health care system barriers, physician barriers, communication barriers, adolescent and young adult barriers, and parent barriers.  Each present their own set of unique challenges.  Health care system barriers demonstrate that while national guidelines have been disseminated and accepted, hospitals do not have procedures or policies in place that enforce the implementation of guidelines or designate which health care provider (physician, nurse, patient navigator, etc) are responsible for initiating the discussion.  This leads into the next barrier: physician barriers.  Physicians are often reluctant to endorse fertility preservation as they feel discussing infertility and fertility preservation options are neither appropriate nor an immediate clinical priority in light of a cancer diagnosis.  Beyond that, physicians are tasked with providing a large amount of information to patients in a short amount of time after their cancer diagnosis which is where the communication barrier is most evident.  Patients are flooded with information relating to diagnosis, treatment, side effects, and outcomes and the discussion of fertility preservation is often considered a lower priority.  In addition, adolescent and young adult barriers and parent barriers are often intertwined throughout the course of cancer diagnosis and discussion.  Discussion about fertility, such as sperm banking and ovarian stimulation, can be uncomfortable for adolescents or young adults and the process for fertility preservation can seem daunting in the face of a cancer diagnosis.  Parental barriers often relate to lack of knowledge about the emotional development and cognitive process of their child as well as varying religious or cultural values of the family.  Occasionally, the patient and the parent are at odds in their decisions and many physicians lack the tools necessary to effectively navigate the conversation.

With greater publicity around fertility preservation for cancer patients, more patients and parents are becoming their own advocate and requesting information and services for fertility preservation even if their physician does not offer it.  However, the responsibility for conveying information about fertility preservation to patients lies in the hands of the medical professionals.  The ASCO Guidelines and subsequent QOPI measures are mechanisms to improve communication and ease the referral process.  New methods of communication strategies between physicians, parents, and patients must be identified and assessed and applicable training should be available to medial professionals on how to discuss fertility preservation with patients and their families.

Discuss communication strategies and troubleshoot barriers within your own home institution and refer back to Chapter 10, Fertility Communication to Cancer Patients: A Hematologist-Oncologist’s Perspective for talking points and references. Additional  resources can be found on the Online Resources section or Patient Resources section of the Oncofertility Consortium website

 

Tomorrow is International Childhood Cancer Day

Screen Shot 2014-02-14 at 2.04.05 PMTomorrow, February 15, 2014, is International Childhood Cancer Day.  A day devoted to the strength, courage and resiliency of children with cancer and their families.  The International Society of Pediatric Oncology (SIOP) and the International Confederation of Childhood Cancer Parent Organizations (ICCCOI) represent pediatric oncologists and childhood cancer parents’ organizations from countries around the world coming together for a common goal.  Every year more than 250,000 children are diagnosed with cancer with 90,000 dying from the disease when 70% of all childhood cancers are curable!

Screen Shot 2014-02-14 at 2.03.28 PMWhile adult cancers have benefited from new targeted drug therapies, childhood cancer drug development has lagged behind and children are receiving very strong drug doses that have many long-term effects.  These long-term effects are especially worrisome to the Oncofertility Consortium as they often relate to future fertility of childhood cancer survivors.  These cancer drugs save the life of patients but often eliminate the possibility for patients to have biological children when they are adults.  Research needs to progress quickly with simultaneous goals of identifying a cure for childhood cancer and eliminating the long-term side effects of cancer therapy on survivors.  We look forward to a day when cancer is no longer a concern and will work tirelessly to help the efforts in any way we can!  In the meantime, patients and their families can access a wealth of information at the Fertility Preservation Patient Navigator and  Oncofertility Consortium websites.

 

Virtual Grand Rounds on February 13, 2014

Screen Shot 2014-02-10 at 2.32.09 PMJOIN US! 

This Thursday, February 13th at 10am Central Time, the Oncofertility Consortium is proud to host our next Virtual Grand Rounds.  This presentation will be given by Dr. Robert E. Branningan and focus on Fertility Preservation in the Male: Optimizing the Delivery of Care.  Dr. Robert E. Brannigan is an Associate Professor of Urology, at Northwestern University.

 

To Attend Online:

  • On the day of the conference, login to participate beginning at 9:50 AM Central Time.
    • Login as a guest (you will not be given a login)
    • When asked for your name, please try to include your institution (for example: YourName@Northwestern) so we can identify you if you ask a question!
    • For technical assistance, please contact: Zoran Ilic at z-ilic@northwestern.edu (NOTE: Technical support is not available during the presentation)
  • Download the App to view this presentation on your iPad.
  • Test the computer you plan to use the day of the conference for compatibility.

To Attend in Person:

Come to the Robert H. Lurie Comprehensive Cancer Center, 303 E. Superior St., Suite 10-123, Chicago, IL 60611

View some of our previous Virtual Grand Rounds.

Communication Disparities

Screen shot 2013-10-30 at 4.09.44 PMThe next chapter in Oncofertility Communication: Sharing Information and Building Relationships across Disciplines addresses Disparities in Adolescent Patient-Provider Communication Regarding Fertility.  The authors, Amanda B. Fuchs and Dr. Robert E. Brannigan, provide detailed information regarding the disparities between providers and their adolescent patients even though in 2006 the American Society of Clinical Oncology (ASCO) published recommendations that oncologists should not only inform patients of the possibility of infertility as a result of cancer treatment, but must also discuss fertility preservation options with patients of childbearing age, including adolescents.  While the recommendations are available to oncologists, it is obvious that fertility preservation counseling services are still not reaching the adolescent patient population to the level needed.

Studies have shown that females are more likely than males to seek evaluation of fertility status but both males and females express regret for not having undergone fertility preservation prior to treatment.  But when dealing with adolescents, providers are in a difficult situation because adolescents have a wide range of understanding of fertility and are unlikely to initiate such a difficult discussion.  However difficult the conversation may be, the data shows that more than 90% of female oncology patients between 10-21 express a strong concern for their future and they (and their parents) would consider pursuing ‘research treatment’ as a way to preserve fertility as long as treatment was not delayed longer than 1 month.  While parents and adolescents may not be willing to delay treatment to undergo fertility preservation procedures, it is important that physicians inform patients and their families about long-term effects of cancer treatments and offer them the fertility preservation option so they may avoid regret down the road or feel they were mis-informed by their physician.

Screen Shot 2014-01-31 at 3.52.27 PMWhen dealing with adolescent patients, providers are often faced with the complicated task of discerning the physical and intellectual developmental stage of the patient before broaching the fertility preservation discussion.  This is important because the fertility preservation options that are available to post-pubertal patients are not always the same as those available to pre-pubertal adolescents.  Thus, it is necessary to create a paradigm that more clearly defines which patients are candidates for each fertility preservation option.  Some providers feel uncomfortable discussing fertility preservation with adolescents because it requires a basic understanding of sex and reproduction.  Training tools are necessary to assist physicians and nurses in the education of patients and their parents.

Beyond the difficulty discussing fertility preservation with patients, there are a myriad of ethical concerns that are brought to light when considering fertility preservation in adolescent.  Adolescents are not legally allowed to provide informed consent and must rely on the legal protection of their parents.  Older adolescents are able to provide informed assent (agreeing or disagreeing to the procedure or treatment) and the age of understanding varies between 9 and 14.  Nine year olds are less competent in understanding medical information but are able to demonstrate evidence of choice and reasonable outcome.  Fourteen year olds, on the other hand, have demonstrated a level of competency and informed decision making equal to adults.  While adolescents may not have the legal ability to make the decision, it is important for providers to acknowledge their awareness of their illness and make them feel empowered in the medical decision making process.

Chapter 9 of Oncofertility Communication reiterates the need for knowledge dissemination to providers in the medical field so they can adequately discuss fertility preservation options to the adolescent population and dispel communication disparities.  Please browse through the Oncofertility Consortium website to learn more about the resources available to adolescents and their parents.  You can also find more information at MyOncofertility.org, our Fertility Preservation Patient Navigator website, and SaveMyFertility.org.

2014 World Cancer Day

Screen Shot 2014-02-04 at 2.43.17 PMIf you’re not already aware, today is World Cancer Day.  World Cancer Day was founded by the Union for International Cancer Control (UICC) to support the goals of the World Cancer Declaration which calls upon government leaders and health policy-makers to significantly reduce the global cancer burden, promote greater equity, and integrate cancer control into the world health and developmental agenda.  The overarching goal of the Declaration is that there will be major reductions in premature deaths from cancer, and improvements in quality of life and cancer survival rates through nine major targets.

The World Health Organization released The World Cancer Report predicting that new cancer cases will rise from 14 million to 22 million between 2012 and 2020 and estimating an increase in cancer deaths during the same period from 8.2 million a year to 13 million.  These numbers demonstrate the growing need for policy-driven preventative public health policies.  The report indicates that approximately half of all cancers are preventable and could have been avoided if lifestyle factors such as drinking, smoking, diet and exercise were modified, if screening programs were implemented, or certain vaccines were given.  Lifestyle modifications will not prevent all cancer diagnoses and deaths, but it is clearly a step in the right direction and will allow for more focus and funding to be spent on spontaneous cancer diagnoses and the long term effects of treatment.  While the Oncofertility Consortium is dedicated to addressing the complex health care and quality-of-life issues that concern young cancer patients whose fertility may be threatened by their disease or its treatment, we look forward to the day when our work is obsolete.  Please join the Oncofertility Consortium in standing up in support of World Cancer Day!

Communicating Oncofertility to Children

978-1-4614-8234-5 (1)We’re jumping back into the chapter reviews of Oncofertility Communication: Sharing Information and Building Relationships across Disciplines.  Today, we’re reviewing Chapter 8, Communicating Oncofertility to Children: A Developmental Perspective for Teaching Health Messages by Dr. Ellen Wartella, Dr. Alexis Lauricella and Lisa Hurwitz.  Communicating health information as a whole, and especially reproductive health and sexuality, requires an understanding of what is developmentally appropriate for children.

Research has indicated that under the age of 7, children have very little understanding of the sexual function of genitalia, and only a rudimentary understanding of pregnancy occurring in the mother’s “stomach”.  Moving into middle school, there is more knowledge about terminology but confusion and uncertainty about reproduction and sexual activity.  Chapter 8 indicates that this aligns with the American Academy of Pediatrics Committee on Public Education which has shown that the majority of children and adolescents’ knowledge about sexuality comes from popular television and movies which rarely provide details about birth control, HIV, or other sexually transmitted diseases.

Screen Shot 2014-01-31 at 2.43.27 PMThankfully, progress is being made to create educational, curriculum-based television programs to address more specific issues relating to health as a whole and reproductive topics: Fizzy’s Lunch Lab, a PBS online website, provides an opportunity to teach children about healthy eating and Doc McStuffins, a Disney program about a child who pretends to be a doctor to her stuffed animals.  Beyond general health, Sesame Street co-productions have been successfully implemented to teach young children and families about specific area-related health messages.  For example, in South Africa in 2001, here was a very high rate of HIV infection and considerable stigma associated with the disease.  Takalani Sesame was created and introduced an HIV-positive character, Kami, to teach young children basic health and social information about HIV/AIDS and demonstrated improvement in children’s basic knowledge about HIV/AIDS, blood safety, destigmatization and coping with the illness.

Puppets and dolls have also been used to convey medical information to children and adolescents, but video recordings of puppets and dolls are the easiest way to standardize the transmission of educational information that can reach far beyond hospital and medical office walls to reach a wider audience.  Experts are offering suggestions on how to choose and tailor the above techniques depending on the age of targeted children.  Information needs to be simplified using age-appropriate terminology and descriptions and including the use of tactile components if designing interventions for very young children.

Read Chapter 8 of Oncofertility Communication: Sharing Information and Building Relationships across Disciplines and continue reading below for exciting new research being done by authors Wartella and Lauricella.

Screen shot 2014-01-23 at 3.52.46 PMThe Oncofertility Consortium prides itself on reaching across medical and educational disciplines to create and support robust and applicable materials for use by both clinicians and the public.   As such, the Oncofertility Consortium is excited to announce work being done in The Center on Media and Human Development within the School of Communication at Northwestern University under the direction of Dr. Ellen Wartella.

The Center on Media and Human Development is dedicated to training future researchers to conduct research in the field of human development and media.   Dr. Wartella and Dr. Alexis Lauricella are working on a project to help researchers understand what children, and their parents, think about reproductive health.  This will be done through an IRB-approved study asking parents and children to attend at a focus group at Northwestern University.  Learn more about the project, IRB #89306: Children’s Understanding of Reproduction Health and Parent’s Beliefs About Reproduction Health Education, at the CMHD website.

Please contact Dr. Lauricella at cmhd@northwestern.edu with any questions or concerns.  We look forward to learning about the data gathered during the study focus groups.

To learn about Oncofertility Consortium research projects, feel free to explore the research listings on the Oncofertility Consortium website.

Global Partner: Portuguese Centre for Fertility Preservation

The Oncofertility Consortium is happy to welcome the Portuguese Center for Fertility Preservation as a Global Partner.  We currently work with reproductive specialists from all over the world in an effort to better serve children, adolescents and young adults with cancer and other fertility-threatening diseases.  Learn more about the Portuguese Centre for Fertility Preservation below.

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The Portuguese Centre for Fertility Preservation (in the Human Reproduction Service of the Coimbra Hospital and University Centre) is the only public centre of the country and it was created in 2010 to fulfill the reproductive needs of patients undergoing treatments possibly threatening to their reproductive function. In Portugal, the male fertility preservation is done since the 90’s in several public institutions. However, the female fertility preservation techniques weren’t available before in the Portuguese public practice. So it was clearly important to do something to try to assure the biological parenthood of the female patients too.

Since 2010, our main goal is to provide reproductive monitoring and counseling to male and female patients from every part of the country that are undergoing  possibly gonadotoxic treatments. Through a multidisciplinary approach, we try to support the decision-making process of the patients about the preservation of their fertility and, whatever the decision made by the patient, we try to support their reproductive decisions after the end of the treatments, throughout annual follow-up consultations.

Although most of the cancer patients are referred to the Centre by their oncologists, it is important to note that a significant number of them asks for a consultation by their own. However, the opportunity to make a decision about fertility preservation is stated by all cancer patients as crucial, regardless they were referred by the oncologist or not. Patients tell us how important it is for them to receive information not only about the disease or the immediate effects of the treatments, but also about how to try to protect their parental project. This gives them hope, and some sense of control in a context of truly uncontrollability.

Therefore, another goal of our Centre is to try to better inform patients, health professionals and general population about the impact of cancer in fertility, the techniques of fertility preservation and how to reach our team. To achieve this goal we are working in several ways. Firstly, we have already developed some written information for the patients that are assisted in our Centre (and these patient fact sheets have been anonymously evaluated by the patients as very useful for their decision-making process). Secondly, some team members are developing research (with funding by the Portuguese League Against Cancer and Celgene® – ref. LPCC/Celgene2013 – and by the Foundation for Science and Technology – ref. SRFH/BD/84677/2012) to try to better understand the information needs and the attitudes of the cancer patients and the oncologists about fertility preservation. Thirdly, we have organized our first course about fertility preservation for health professionals in October 2013, in the 5th Portuguese Congress of Reproductive Medicine, with the paticipation of Professor Teresa Woodruff, M.D., Ph.D. Lastly, we are developing our own website with some information specifically designed to health professionals and other specific information to patients and public population.

Thus, the Portuguese translation of the SaveMyFertility application will help us achieving this goal. On one side, it will better support the information presented in our website and then it will help us informing the patients, health professionals and general population to get more information about this theme. On the other side, it will be important in our clinical practice, as we will explore the application with the patients at the decision-making process about fertility preservation and we will recommend them to consult it profoundly at home and come back to us for any doubt. This way, the patients are guided to have access to well done and organized information in a specific and recommended tool.

The Portuguese Centre for Fertility Preservation team is coordinated by Professor Teresa Almeida Santos, M.D., Ph.D., director of the Human Reproduction Service of Coimbra Hospital and University Centre and professor of the Faculty of Medicine of University of Coimbra. It is constituted by:

  • Four doctors, full time members of Human Reproduction Service of Coimbra Hospital and University Centre;
  • One doctor, full time member of Gynecology Service of Coimbra Hospital and University Centre;
  • One biologist, full time member of Human Reproduction Service of Coimbra Hospital and University Centre;
  • One psychologist, Ph.D. student from the Faculty of Psychology and Educational Sciences of University of Coimbra and member of the Unity of Psychology Intervention of the Maternity Dr. Daniel de Matos of Coimbra Hospital and University Centre;
  • One pharmacist, Ph.D. student from the Faculty of Pharmacy of University of Coimbra.

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The Oncofertility Consortium is excited to welcome another Global Partner to our group.  For more information about the Portuguese Centre for Fertility Preservation or our other Global Partners, please review out the Oncofertility Consortium‘s Global Partner webpage.

Focus on Family

Luke blogBelow is a guest post from Luke Tripodi on the importance of family during his cancer journey.  We thank him for taking the time to guest post and wish him continued health!

By Luke Tripodi

My story starts off the same way so many others’ do.  It starts with a diagnosis.  The shock, sadness, and fear of the unknown.  Then comes selecting a doctor, a hospital and a treatment plan.  And finally your treatment either works or it doesn’t…or it does but then the cancer comes back so really it didn’t work, and then you think it worked but the cancer comes back again so really it didn’t work…

I could write about my experience outlining every detail from the first time the “C” word was uttered to my most recent annual CT scan.  I could tell you how initially I had a tumor in my leg, after treatment was clean for 3 years then it came back in my lung and after 3 thoracotomy surgeries and some chemotherapy we finally just yanked that bad boy (left lung) outta there.  I could talk about life with one lung and how I don’t really remember what it’s like to have two, so the impact has seemed to be relatively immaterial.  There are a lot of stories I could share (and would be happy to in the future if it would help someone out) but today I want to focus on one thing.  My family.

Family can come in many different forms. It can be the two people that raised you and siblings, it can be close friends, grandparents, aunts, uncles or all of the above.  In my journey with cancer it was my mom, dad, two brothers, sister, grandma, grandpa and uncle.  Each one of these people were there for me, some at different phases, others at every turn.

I remember one doctor’s appointment toward the beginning of this journey where they had to bring extra chairs into that little room because my mom and dad and uncle and grandfather were there. I remember thinking ‘oh geeze, this probably looks a little strange’ but shortly after I remember thinking how blessed and fortunate I was that the people there by my side, my family, couldn’t fit in the doctor’s office.

After I had my lung removed it was the worst three months of my life.  Recovering from that invasive of a surgery was by far the hardest thing I’ve ever had to do.  But I remember my parents being right there every step of the way.  I fell into a dark place during that time, convinced I would never feel better, but my parents were always there reassuring me that I would recover.  Sometimes having to force me to eat because I just didn’t have an appetite, ever.  My parents single handedly (albeit with the help of other family members at time) nursed me back to health, both physically and mentally.  I had been through so many surgeries that ultimately didn’t take that I was running low on will and drive.  But as they had done so many times throughout my life, they re-lit that fire inside of me and helped me get my mind right.

I met an amazing girl one day, quickly fell in love and a few years later I married her.  I remember the first time she came with me to my check-up which typically involved some blood tests and a CT scan.  Anyone on these monthly, quarterly or annual check-ups understands that this is a very anxious time.  You essentially begin to live your life in segments; not knowing what the next segment will look like after you get the results.  I could tell she was scared to death.  We weren’t married yet and I’m sure she had to be thinking, ‘what did I get myself into?!’, but she was there.  Despite her fears, she was there.  When I shared the positive results with her she cried in relief.  It’s quite a thing to be told you have cancer and start that journey, but it’s a whole other level of courage to voluntarily join someone on that journey.  High risk, but hopefully high reward too.

These are just a few memories that stick out and highlight how important my family was, and is, in my journey with cancer.  We have been very blessed as I celebrated my 8th year of cancer free life this year.  I sometimes wonder why I survived when so many do not.  Maybe I’ll never know for sure, but I try to live my life with purpose and use my journey to help others.  I hope to write again and share other experiences, stories, laughs and tears, but for now I thought it was most important to write about the people in my life responsible for my survival.  Yes, I had very talented doctors, surgeons, etc. who played an enormous role in my health today, but it was my family who was there everyday that I will be forever indebted to.

Thank you, Luke, for sharing your story and we look forward to having you post again in the future! For more personal stories like Luke’s please review the Oncofertility Consortium Blog.  

Saving Fertility Not Priority at Most Cancer Centers

Lack of policies to protect cancer patients’ fertility at top cancer centers

Best health blogs 2013Infertility is consistently listed as one of the most distressing long-term side effects of cancer treatment for adolescents and young adults. Yet the leading National Cancer Institute-designated comprehensive cancer centers — which should be leaders in fertility preservation — aren’t doing an adequate job of helping patients protect their fertility, reports a new Northwestern Medicine study.

Most of these centers around the country do not have policies or procedures in place to consistently identify which patients may be at risk for fertility loss, inform patients of this risk in a timely manner or refer them to fertility specialists, the study found. At the time of the study, there were 39 comprehensive cancer centers that treated adults.

“It can be shocking for patients to find out their fertility was affected when there were potentially options that exist that were not offered to them,” said lead study author Marla Clayman, an assistant professor of medicine at Northwestern University Feinberg School of Medicine and a member of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

The paper was published this month in the Journal of the National Comprehensive Cancer Network.

“These are the centers that are at the vanguard of research and have the most people and financial resources,” Clayman added. “This should be part of the exemplary cancer care patients get in these centers.”

A patient navigator for fertility preservation sees cancer patients at the Lurie Cancer Center, Clayman noted. Northwestern is the site of the Oncofertility Consortium, a national, interdisciplinary initiative designed to explore the reproductive future of cancer survivors.

Survival rates for young cancer patients have steadily increased over the past four decades due to more effective treatments. More women and men look forward to life after cancer and having children is a key part of their hope for the future.

“When you think about having children after cancer, that’s a very strong way to think about surviving and thriving after cancer,” Clayman said. “It’s not just that you want to live, it’s that you want to live a life as close as possible that you could have without cancer.”

Fertility navigators or a designated fertility educator are key to bridge the gap between oncology and fertility. But less than one-third of the centers had someone in this role, the study reports.

Fertility navigators or educators reduce the need for oncologists to have in-depth discussions about potential fertility loss and fertility preservation, a rapidly changing field in which they are not experts.

Clayman also pointed out that if these institutions with the most resources have not made fertility preservation a priority, then providing these services to the patients who are seen in community and private clinics cannot be expected to occur.

Clayman is a co-editor, along with Northwestern’s Teresa Woodruff and Kate Waimey of the new book, Oncofertility Communication. Woodruff, chief of fertility preservation at Feinberg, founded and leads the Oncofertility Consortium.

The study was funded by grant 5-UL1DE019587-05 from the National Institute on Child Health and Human Development at the National Institute of Health.

MEDIA CONTACT: Marla Paul at (312) 503-8928 or marla-paul@northwestern.edu
SOURCE CONTACT: Marla Clayman at m-clayman@northwestern.edu  or 312-503-3915.
NORTHWESTERN NEWS: www.northwestern.edu/newscenter/

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