New Tool for Fertility Preservation in Community Cancer Centers

In 1974 a small group of physicians seeking to dispel the myth that community physicians were uninterested in and incapable of participation in state-of-the-art cancer care came together to form the Association of Community Cancer Centers (ACCC). ACCC was born to give oncology practitioners in the community a voice in the national oncology forum and it would become the mechanism through which clinical protocols and other oncology standards of care were developed and disseminated to community cancer programs across the nation. ACCC promotes the entire continuum of quality cancer care for both patients and communities.

Most recently, Faye Flemming, RN, BSN, OCN, member of ACCC, created Nicole’s Oncofertility Toolkit to help facilitate the development of a formalized oncofertility program in community cancer centers. Faye initiated the project as a direct result of the pain and suffering her 28year old newly married niece, Nicole, endured when her oncology team failed to address her oncofertility needs immediately after diagnosis. Ultimately, Nicole’s fertility needs were recognized, but it wasn’t until months later after she found an oncology provider that was equipped with the tools, resources and knowledge to facilitate this. It also took persistence on Nicole’s part to seek out a cancer care team that would ensure she had fertility options prior to undergoing fertility impairing treatment.

Nicole’s Oncofertility Toolkit is a resource for both patients and healthcare professionals. It provides each with general information (statistics, cost, procedures, assessment), tools for establishing a program and resources for fertility preservation information so that both the provider and the patient are well informed. According to Faye, “Many cancer patients experience unnecessary emotional turmoil due to a lack of attention, knowledge, support, resources, planning and preparation related to oncofertility issues and both the providers and payers are to blame.” Therefore, this toolkit was created to empower both patients and providers to take control of the fertility options available to men, women and children.

In a community-based setting, it can be challenging to meet the fertility needs of cancer patients, but with the addition of Nicole’s Oncofertility Toolkit, it opens up a much needed dialogue about oncofertility, increasing the likelihood that fertility will be addressed at diagnosis in age appropriate patients.

 

iSaveFertility Canadian Invasion!

As you may already know, The Oncofertility Consortium partnered with the Endocrine Society to release the free, iSaveFertility iPhone App nearly a year ago this week.  iSaveFertility was developed to give oncologists and fertility specialists a quick reference guide for preserving the fertility of children, women and men diagnosed with cancer. In today’s world, more and more health care professionals are using smartphone technology as part of their daily lives, with apps being designed in lieu of cumbersome pocket-guides to meet their diagnostic and medical information needs. In oncology and fertility care, access to the most recent information and tools available at the point-of-care is critical for both providers and patients in the fight against cancer, thus iSaveFertility was born!

In July of last year, the Oncofertility Consortium partnered with the Cancer Knowledge Network (CKN), an affiliate of the Canadian journal, Current Oncology, to reach the larger  population of oncology professionals in an effort to provide insight into the complex health care and quality-of-life issues that concern cancer patients whose fertility may be threatened by disease or its treatment. As a result of this partnership, CKN is working with us to help disseminate information about fertility and cancer awareness across Canada by utilizing the iSaveFertility iPhone app in healthcare settings. It is the objective of all those involved with CKN and the Onocfertility Consortium to provide an open-access, multi-disciplinary forum for oncologists and cancer-care professionals to connect, become informed and initiate discourse.

Utilizing new technology, such as the iSaveFertility, is helping to change the face of comprehensive cancer care. Providers rely on the apps to give them the most up-to-date healthcare information, which in turn benefits the patient by ensuring they are well-informed and in control of their cancer treatment. We are excited to engage with the larger oncology community and to improve care to cancer patients with the help of CKN and iSaveFertility.

To learn more about iSaveFertility, visit SaveMyFertility.org and download the free app. To learn more about CKN, please read our past blog post or visit, Cancer Knowledge Network.

 

Repropedia: Reproductive Definitions Coming Soon to a Website Near You

Look of Repropedia.org from a smartphone

Last June, we discussed the launch of a new online dictionary dedicated to defining reproductive words in easy to understand terms. Since then, we’ve been linking our reproductive terms to the website, Repropedia.org, which is an authoritative website that provides short, jargon-free descriptions to the public. Recent updates have now made it easier than ever 1) for people to use the website, and 2) for blogs like ours to link to the website’s words.

The first change to the website is called “responsive design.” This means that the website responds to the type of computer device of a user. For example, if I’m on my smartphone, the website automatically configures itself one-way but if I go to the website on my iPad or my desktop computer, the website will change again to fit these devices. It’s almost like the developers have built their own app for the website!

The Repropedia.org screen changes format when viewed on a large screen

The second change to the website will affect how you read this blog. As you may have noticed, in the past when we wrote reproductive terms and linked them to Repropedia, the definition was opened in a brand new webpage. Now, you can click on the word and the definition will “pop-up” directly on the blog’s page. With this new system, you will be able to tell the Repropedia-linked words because they will appear purple and underlined. For example, you can see that here with the term fetus.

The Oncofertility Blog is currently beta-testing this technology for Repropedia so if you see anything you like (or don’t like), please tell us. Also, if you manage a website or blog and would like to incorporate these definitions into your own site, you can get on the list to integrate the Repropedia Tooltip when it becomes widely available.

Fertility Preservation and Sex Disparities

Infertility has been associated with psychological distress and can have a negative impact on quality of life in cancer survivors.  Reproductive concerns are often sited among young cancer survivors prior to, and following cancer treatment. A number of fertility preservation (FP) options are available to preserve patients’ future reproductive ability. For men, sperm banking is a clinically established method, and a relatively straightforward procedure in comparison to FP for women, which is more complex. In a new article published in the Journal of Clinical Oncology by authors Gabriela M. Armuand, Kenny A. Rodriguez-Wallberg, Lena Wettergren, Johan Ahlgren, Gunilla Enblad, Martin Ho ̈glund, and Claudia Lampic, entitled, “Sex Differences in Fertility-Related Information Received by Young Adult Cancer Survivors,” the authors investigate male and female cancer survivors’ perception of fertility-related information and use of FP in connection with cancer treatment during reproductive age.

The authors used a sample of 484 survivors diagnosed from 2003 to 2007 identified in population-based registry in Sweden. Inclusion criteria included survivors who were age 18 to 45 years at the time of diagnosis and had lymphoma, acute leukemia, testicular cancer, ovarian cancer, or female breast cancer treated with chemotherapy. Study participants were asked to fill out a questionnaire assessing their experience with FP and knowledge of FP techniques following a cancer diagnosis.

The majority of male participants reported having received information about treatment impact on fertility (80%) and more than half of the men banked frozen sperm (54%). Among women, less than half reported that they received information about treatment impact on fertility, and 14% reported that they received information about FP. Only seven women, or 2%, underwent FP.  Sex was the single most important predictor for receipt of information about FP; a man was 14 times more likely to report having received such information than a woman. The results of this study are even more interesting when you take into account that in Sweden, infertility treatment is part of the tax-funded health care system; therefore, FP is available to all patients with cancer. Nonetheless, this did not seem to have an impact on female access to FP information and services.

The results of this study suggest significant sex differences when conveying fertility-related information and the use of FP. As a result, the authors argue that there is an urgent need to develop fertility-related information adapted to female patients with cancer to improve their opportunities to participate in informed decision-making regarding their treatment and future reproductive options. In an effort to meet the needs of young female cancer patients, the Oncofertility Consortium developed educational materials to help young women and their families better understand their fertility preservation options. Read, “Sex Differences in Fertility-Related Information Received by Young Adult Cancer Survivors.”

May 17th Live Podcast: Reproductive Technology at the Office of Research on Women’s Health

A person’s health is influenced by many factors; including, sex, gender, culture, environment, and income. Researchers are discovering the critical roles that sex and gender identity play in health, wellness, and disease progression. The discoveries being made through the study of women’s health and sex differences are key to advancements in personalized medicine for both sexes.

The Office of Research on Women’s Health (ORWH) was established in September 1990 in response to congressional, scientific, and advocacy concerns that a lack of systemic and consistent inclusion of women in National Institutes of Health (NIH) supported clinical research could result in clinical decisions being made about health care for women based on findings from studies of men—without evidence that they were applicable to women. Since that time, the Office has been the focal point for guiding the national research effort on women’s health issues and is responsible for ensuring that women’s health research priorities are integrated into the wider NIH research agenda. The mission of ORWH is to:

  • Advise the NIH Director on matters relating to research on women’s health
  • Strengthen and enhance research related to diseases, disorders, and conditions that affect women
  • Ensure that research conducted and supported by NIH adequately addresses issues regarding women’s health
  • Ensure that women are appropriately represented in biomedical and biobehavioral research studies supported by NIH
  • Develop opportunities for and support recruitment, retention, reentry, and advance- ment of women in biomedical careers
  • Support research on women’s health issues.

ORWH works in partnership with the 27 NIH Institutes and Centers to ensure that research on women’s health is part of the scientific framework at NIH, and throughout the scientific community. ORWH develops and supports scientific seminars, symposia, and workshops that highlight scientific advances, career development, and promising as well as accomplished researchers in this expanding field. This Thursday, May 17th, Oncofertility Consortium member, Dr. Clarisa Gracia is taking part in a seminar series sponsored by the ORWH entitled, Innovations in Reproductive Technologies from 1-3pm EST, which will be available to listeners live, via podcast. Highlights of the seminar include:

  • Ethical Issues in Emerging Technologies in Reproductive Medicine; 
Alan Decherney, MD, Head, Section on Implantation and Oocyte Physiology
Program in Reproductive and Adult Endocrinology
  • Emerging Technologies in Infertility; 
Clarisa Garcia, M.D., M.S.C.E, Assistant Professor Obstetrics and Gynecology
  • Technology in Reproductive Medicine; 
Alicia Armstrong, M.D., Associate Fellowship Program Director
Reproductive Endocrinology and Infertility
  • Multipurpose Prevention Technology for HIV, STIs, and Pregnancy
; Gustavo Doncel, M.D., Ph.D., Professor of Obstetrics and Gynecology
  • New Technology in Contraception Research
; Regine Sitruk-Ware, M.D., Reproductive Endocrinologist

Mark your calendars and tune in tomorrow to http://videocast.nih.gov at 1pm EST to listen live!

Gaps in Fertility Preservation Knowledge in Young Cancer Survivors

Infertility is serious and often underestimated side effect of cancer treatment. Ensuring cancer patients are equipped with the necessary health information to protect and preserve their fertility in a time sensitive manner is a critical component to comprehensive cancer care. In a new article in Nursing: Research and Reviews, by Angela Jukkala, Karen Meneses, Andres Azuero, June Cho and Patrick McNees, entitled, “Development of the Knowledge of Fertility and Fertility Preservation Scale,” the authors reported on a process used to develop and examine the reliability and validity of an instrument to measure a breast cancer survivor’s self-assessed knowledge of fertility and fertility preservation.

In their study, 92 breast cancer survivors between the ages of 25-45 were asked to complete the Knowledge of Fertility and Fertility Preservation (KF) Scale as part of their participation in a larger study, the Fertility Cancer Project (FCP). The KF Scale is a new instrument designed to measure a breast cancer survivor’s self-assessed level of knowledge of fertility and fertility preservation. The content of the KF Scale was developed through a comprehensive review of the literature, researcher clinical expertise, and expert review to meet the fertility and fertility preservation knowledge needs of young breast cancer survivors. The KF Scale included 13 content areas grouped into three subscales: Treatment Factors Affecting Fertility, Infertility Information, and Alternative Parenting Options.  All items were scored on a 1–3 rating scale with 1 representing “a little”, 2 representing “some”, and 3 representing “a lot” of knowledge.

The results of the KF Scale analysis were consistent: many participants self-assessed their overall knowledge of fertility and fertility preservation as “a little” and the majority rated their knowledge for the Infertility Information subscale as “a little.” What this means is that most patients completed their chemotherapy treatment having only “a little” knowledge of cancer treatment’s impact on their fertility and only “a little” knowledge about fertility preservation options beforehand. These results suggest that more health-related communication and information about fertility impacting cancer treatment is needed prior to undergoing treatment. According to the authors, “Health care professionals providing care for young women newly diagnosed with breast cancer must be able to provide needed health information on a wide range of topics (eg, surgery, chemotherapy, fertility preservation) in a relatively short period of time.”

To ensure that patients receive quality nursing care, they need to be informed of the long-term side effects of chemotherapy, including infertility. The KF Scale could be used to develop individualized teaching plans to meet patient-specific fertility and fertility preservation health information needs. The KF Scale could also be used to examine the effectiveness of educational interventions if used before and after the intervention. Read “Development of the Knowledge of Fertility and Fertility Preservation Scale.”

This Mother’s Day: A Journey Through Fertility Preservation, Surrogacy and Sisterhood

This Sunday is Mother’s Day. Many of you may have plans with your family doing your best to ensure that the day is celebrated, and the women in your life who fit this profile, past and present, are honored in some way. It goes without saying that being a mom is rewarding, but it can also have its challenges so it’s only right that we have one calendar day each year designated to showing gratitude for motherhood. That being said, what constitutes motherhood, comes in all different shapes and sizes…

In 2008, at age 26, Melissa Brown was diagnosed with breast cancer. Cancer was no stranger to her family – her mother had been battling breast cancer on and off since she was two years old.  Melissa had been giving herself breast exams since she was 12 so when she found the pea-sized lump in her breast, she knew something was amiss.  Within days of finding that lump, she was diagnosed with breast cancer and would eventually undergo chemotherapy (side by side with her mother) and have a bilateral mastectomy. Thankfully in Melissa’s case, her oncologist, the same one who had been treating her mother for 20 years, encouraged her to preserve her fertility before she began treatment for her cancer. Following his advice, she began taking fertility drugs to produce multiple eggs for fertilization, and with the help of her fiancée Steve, banked 4 embryos prior to cancer treatment.

Melissa’s cancer treatment was filled with highs and lows – she married Steve, and lost her mom to cancer. Following treatment, she wanted to have a baby with her new husband, however her oncologist recommended that if she wanted to have children, she use a gestational carrier or surrogate due to the possibility of cancer recurrence. Melissa was at a crossroads, until her younger sister Jessica, 25 at the time, said that she would carry Melissa’s babies for her. Melissa realizing the breadth of Jessica’s kindness and the responsibility she would undertake, agreed, but only after lengthy discussions and a little bit of soul searching.

Months earlier, Melissa and Steve banked their embryos at UPenn with the assistance of Oncofertility Consortium member, Dr. Clarisa Gracia. Now, under different circumstances, Melissa (with her sister in tow) was meeting with Dr. Gracia to discuss surrogacy. Dr. Gracia recognized that Jessica was not the ideal surrogate – she was young and had not given birth before, having no children yet. Complications could arise from a pregnancy, potentially leaving Jessica unable to have her own children one day. According to Gracia, “I was very concerned from the get-go, [but] she just really wanted to do this for her sister.”

In 2010, Dr. Gracia transferred two of the 4 embryos into Jessica’s uterus – both implanted, resulting in twins. Nine months later, Melissa and Steve were parents to Brendan and Gabriella via C-section. This Mother’s Day, as the twins are learning to walk, Melissa and Jessica will celebrate their mother’s memory and the bond that they have, which has only been strengthened through this journey. Read Melissa and Jessica’s entire story on Time.com, by author Bonnie Rochman, entitled, “My Sister, My Surrogate: After Battling Cancer, One Woman Receives the Ultimate Mother’s Day Gift.”

Oncofertility at the USA Science & Engineering Festival

By Nadia Johnson

In October 2010, the Center for Reproductive Research (CRR) supported an exhibit at the inaugural USA Science & Engineering Festival, held on the National Mall, in Washington, DC, in which we showcased the Women’s Health Science Program, drew attention to the under-representation of women in the science workforce, and presented knowledge about research focused on women’s reproductive health.  The festival was a great success, so we didn’t hesitate when we were asked to participate in the 2nd annual USA Science & Engineering Festival, which took place in the Walter E. Washington Convention Center in Washington DC on April 28-29, 2012.

The title of our booth this year was “Just Bead It,” and focused on an activity that we do in the Women’s Health Science Program to teach our students about oncofertility – making alginate beads!!

Our activity was a huge attraction for young and old alike…while the youngest could not fully grasp what they were doing, the adolescents and adults were fascinated to learn that this simple material (alginate) which stands in as a pimento in olives, is actually helping us make major advances in preserving female fertility.

The USA Science & Engineering Festival also provided us the unique opportunity to speak with the many fellow educators who were representing their institutions.

The event was a huge success!  This year’s festival contained double the number of exhibitors, and an estimated 150,000 people visited the Expo.  We all enjoyed the lively atmosphere, imbued with science curiosity, discovery, camaraderie and enthusiasm!

Fertility Concerns Among Female Adolescent Cancer Patients and their Parents

Pediatric cancer, a disease once thought to be primarily incurable, now has an 80% cure rate as a result of clinical advances in technology, pharmaceuticals and screening. For many young patients and their families, survival takes precedence over all other issues immediately following a cancer diagnosis. As a result, late effects such as fertility loss, are often not addressed until remission or after fertility impacting cancer treatments have already begun. A new publication in the journal, Pediatrics, by Gwendolyn Quinn, Caprice Knapp, Devin Murphy, Kelly Sawczyn, and Leonard Sender entitled, “Congruence of Reproductive Concerns Among Adolescents with Cancer and Parents: Pilot Testing an Adapted Instrument,” the authors conducted a pilot study to test a 10-item reproductive concerns scale adapted for female adolescent cancer patients and their parents, to determine the congruence between parent and adolescent fertility cancers as a result of cancer diagnosis.

The authors hypothesized that adolescent patients would struggle to actualize long term cancer effects as a result of their young age and inexperience with parenthood; therefore, have fewer reproductive concerns than their parents. Parents on the other hand, would view their child’s fertility loss more negatively and dramatically due to their experience as parents. The authors also hypothesized that age would play a factor in the congruence of fertility concerns between parent and child with older adolescents sharing similar reproductive concerns with their parents.

In order to obtain accurate and unfiltered feedback from adolescents, they were interviewed in rooms separate from their parents. Findings showed that the majority of parents provided inaccurate predictions of their daughters’ responses regarding their reproductive concerns.  Overall, parents underestimated their child’s desire to have children of their own one day and expected that their children would be satisfied with survivorship.

As a result of this study, two key issues regarding adolescent reproductive concerns and parent perceptions were highlighted: 1) that creating and administering pediatric instruments must be done with pediatric patients for accuracy, without parental involvement which often inhibits free expression, and 2) parents often underestimated their daughters concern about future reproduction when impacted by a cancer diagnosis.  This study demonstrates that adolescents have strong reproductive concerns that are not being captured in current quality-of-life instruments and may be further neglected because of parents’ unawareness of their child’s concerns.  Thus, patient discussions regarding fertility concerns should be conducted before treatment begins, during and after.

Read: “Congruence of Reproductive Concerns Among Adolescents with Cancer and Parents: Pilot Testing an Adapted Instrument.”

 

 

Scientists Around Globe Peer Into Chicago Microscope at Same Time

The Oncofertility Consortium uses emerging technologies, such as Virtual Grand Rounds, to speed the pace of research. Read about a new way we are doing this to facilitate global collaboration between scientists.

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iExperiment technology gives overseas scientists direct view into Northwestern microscope during experiment, speeding efforts to grow human follicle into mature egg

By Marla Paul

CHICAGO – A scientist in Austria or elsewhere in the world can now peer into a Chicago collaborator’s microscope in real time while an experiment is being conducted at Northwestern University Feinberg School of Medicine.

iExperiment is a novel portal developed at Northwestern where scientists from around the globe can watch and participate in experiments in reproductive health for the Oncofertility Consortium, a National Institutes of Health-funded research project to explore reproductive options for cancer survivors.

“This is the first time researchers can look into a colleague’s microscope from anywhere in the world,” said Teresa Woodruff, director and founder of the Oncofertility Consortium and chief of fertility preservation at Northwestern’s Feinberg School.

The new application of technology will speed the pace of scientific discoveries, she said. “A better way to do science is to share it in real time and have people look at the data as it is collected and to apply that knowledge in their own laboratories,” Woodruff said. “And that is a real paradigm shift in science.”

An upcoming paper in The Journal of Adolescent and Young Adult Oncology describes Northwestern’s new uses of technology in oncofertility that can be applied to other scientific research.

Woodruff’s research focuses on growing a woman’s immature egg cell, contained in a tiny sac called a follicle, to a healthy and nearly mature egg in the laboratory. The research has the potential to eventually provide a new fertility option for women whose cancer treatments destroy their ability to reproduce.

Each digital microscope in Woodruff’s follicle culture room has a camera that streams live video via Vidyo desktop conferencing software. This gives scientists access to the laboratory from any location in the world and allows them to watch experiments on their computers or mobile devices and communicate directly with the researchers.

“Hopefully what we have done is catalyze the research so that instead of having to wait to see the results published, researchers can begin the next generation of work now,” said Woodruff, who also is the Thomas J. Watkins Memorial Professor of Obstetrics and Gynecology. “We think that is really going to mobilize reproductive health sciences in a significant way and could mobilize all science activities.”

The Woodruff Lab collaborated with Northwestern University Information Technology to implement the software and adapt existing video conferencing technologies to create iExperiment.

Woodruff’s goal is to grow a human follicle into a mature egg in vitro that can eventually be fertilized, which represents a solution for cancer patients. “If we work in a traditional way, by ourselves, it will happen, but it will happen too slowly,” she said. “So to ensure the pace and the quality of the research is as high as possible, we felt that a global collaboration was necessary.”

Last fall the group launched the first Oncofertility 101 course, in which international and United States researchers learn techniques used in Woodruff’s lab, such as in vitro follicle dissection. The iExperiment software is installed on their computers so they can work with Feinberg collaborators from afar and share data as it is being discovered, noted Kate Timmerman, director of the oncofertility program.

“Scientists come from as close as Madison, Wisconsin, and as far as Austria, Australia and South America,” Timmerman said. “iExperiment brings us together.”

Marla Paul is the health sciences editor at Northwestern University. Contact her at marla-paul@northwestern.edu

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