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.

Screen shot 2014-01-10 at 9.28.49 AM

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.

Screen shot 2013-09-26 at 3.04.58 PM

 

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/

Emerging Research About Chemo Brain and Hormones

Screen Shot 2013-12-09 at 11.48.44 AM

 

Many cancer patients talk about the problems with memory that they develop during their cancer treatment. While the stress of a cancer diagnosis can itself cause cognitive impairments, so can chemotherapy and radiation treatments. But how do the hormonal changes that women undergo during cancer treatment also affect memory? Joel L. Voss, PhD, an Assistant Professor in the Department of Medical Social Sciences and the Interdepartmental Neuroscience Program at Northwestern University investigates this exact question.

Dr. Voss using advanced brain imaging to examine how chemotherapy affects brain functioning in breast cancer survivors. Chemotherapy can cause damage to the ovaries and can impair the production of estrogen, testosterone, and progesterone. Dr. Voss further investigates the role of hormones on memory impairment in these survivors by asking how adjuvant tamoxifen therapy may affect memory in younger women. As young breast cancer survivors are frequently prescribed for five years after a breast cancer diagnosis, understanding the cognitive effects is important for their careers and quality-of-life into survivorship.Best health blogs 2013

This Thursday, December 12th at 10 am Central Time, the Oncofertility Consortium is proud to host a Virtual Grand Rounds with Dr. Voss as he discusses this important research in a talk, entitled, “The role of hippocampal insults in cognitive impairments related to cancer treatment.”

View some of the previous Virtual Grand Rounds.

 

Learning to Bridge the Information Gap

Best health blogs 2013Information gaps are widely apparent in patient-physician relationships due to a multitude of factors.  Some patients are not interested or emotionally able to process information provided by the physician while certain physicians may not be comfortable discussing various options with their patients or feel that they are not appropriate candidates for a particular procedure.  Whatever the reason for the disconnect, healthcare providers and patients need to find a way to meet in the middle and discuss the difficult decisions and side effects of potential treatments.  Thankfully, the next chapter of Oncofertility Communication: Sharing Information and Building Relationships across Disciplines addresses these gaps in detail.  The authors, Allison Goetsch, Amber Volk, and Dr. Teresa K. Woodruff identify the three main gaps that have created an unmet need for fertility preservation: an information gap, a data gap, and an option gap in the chapter Genetic Counselors: Bridging the Oncofertility Information Gap.

The information gap involves the lack of understanding cancer patients have regarding the possible fertility side effects of their cancer treatment.  Unfortunately, many oncologists do not have the time to discuss future fertility options with patients because their immediate concern is on saving the life of the patient.  Oncology staff feel secure in their decision to withhold fertility information in the effort to quickly proceed with treatment along with the fact that they may not feel adequately educated on fertility preservation options and lack sufficient communication skills to counsel patients on this difficult decision.  With proper counseling, oncology providers would be adequately prepared to facilitate discussions on fertility preservation and post-cancer quality of life.  Without such counseling, patients may feel that oncology healthcare providers do not value their decisions regarding fertility preservation or support their desire to attempt a pregnancy following treatment.  Healthcare providers should never assume that they understand the fears, desires, or preferences of each patient.

With the increase in multidisciplinary cancer care programs, many patients and providers will thankfully have access to skilled genetic counselors.  The genetic counselors are medical professionals who have undergo extensive training in human genetics as well as psychosocial skills.  These psychosocial skills allow genetic counselors to provide much-needed emotional support to the patients, assess psychosocial situations, and provide mental health referrals as needed.  They offer patients a safe place to share concerns and help to reduce anxiety, enhance the patient’s sense of control and increase the patient’s understanding of their disease and options for testing and disease management.

As the authors addressed, the oncofertility information gap can be remedied with the implementation of a multidisciplinary approach to fertility preservation.  This includes not only giving patients access to fertility specialists and skilled oncologists, but offering them access to members of the team who can provide psychological support and counseling.  The National Comprehensive Cancer Network (NCCN) guidelines for young adult cancer recommend a genetic and familial risk assessment within the first 2 months after the start of treatment.  However, healthcare providers should refer young women to genetic counselors prior to treatment.  In doing so, genetic counselors will effectively bridge the oncofertility information gap.

We invite you to continue reading Oncofertility Communication: Sharing Information and Building Relationships across Disciplines and share your thoughts with your healthcare team and to view the Oncofertility Consortium‘s Virtual Grand Rounds featuring Dr. Angela K. Lawson discussing “Psychological Aspects of Fertility Preservation“.

 

Healthline

Partner and Spouse Involvement in Fertility Preservation

Best health blogs 2013What do you do when your partner or spouse is diagnosed with cancer? What if he or she is thinking about undergoing fertility preservation? While the impacts of both cancer and infertility on relationships have been investigated individually, there is little published research on the intersection of the two. A new book chapter from Oncofertility Communication: Sharing Information and Building Relationships across Disciplines investigates the potential ways partners may participate in the oncofertility process, from digesting a cancer diagnosis to helping make decisions about building a future family.

In the chapter, Incorporating Partners and Spouses in Oncofertility Communication, Drs. Megan Johnson Shen and Hoda Badr discuss the impact of potential infertility on cancer patients, their partners, and their relationship. Infertility in the absence of cancer is already known to cause distress in both members of a couple by causing feelings of loss of control, perceived loss of femininity or masculinity, and loss of attractiveness or self-esteem. Sexual dysfunction is also affected in some cancer patients, including those with prostate and gynecologic cancers. Shen and Badr highlight emerging evidence that open, constructive communication increases marital satisfaction regardless of sexual dysfunction and satisfaction. Such communication may also increase relationship satisfaction when discussing infertility concerns.

Shen and Badr also discuss the different options in fertility preservation for men and women, and the emotional outcomes of oncofertility. Cervical cancer patients who opt for fertility preservation experience decreased distress than those who don’t. While the fertility preservation process may delay cancer treatment, some cancers can incorporate fertility preservation into the cancer trajectory. For example, breast cancer patients may undergo breast surgery first and then preserve fertility while healing and prior to chemotherapy. Of breast cancer patients who opted for fertility preservation, those who were referred to a reproductive specialist prior to, rather than after, surgery, begin chemotherapy an average of 24 days earlier than patients who did not receive a referral until after surgery. In addition, providing communication support for these patients and their significant others facilitates the decision-making process and reduces distress.

When undergoing fertility preservation, patients must make complex decisions regarding the legal rights to the materials or any resulting gametes in the case of death or divorce. These choices often force couples to envision intrinsically distressing scenarios in which they are separated by divorce or death. In the chapter, Incorporating Partners and Spouses in Oncofertility Communication, Shen and Badr advocate for an increased agenda on partner involvement in oncofertility research. This could investigate the partner’s role in contributing to and reducing marital distress, and the need to involve partners in oncofertility discussions.

To read more about the communication needs in oncofertility, read this chapter or others in Oncofertility Communication: Sharing Information and Building Relationships across Disciplines.

 

Healthline

Communicating Fertility to High-Risk Patients

Women who have a high risk of breast or ovarian cancer face a number of looming decisions; from whether or not to undergo prophylactic surgery, to electing increased surveillance, to taking risk-lowering medication.  Interwoven with these decisions is the implication each will have on fertility.  The next chapter in Oncofertility Communication: Sharing Information and Building Relationships across Disciplines delves into the topics discussed during a high-risk consultation and provides case examples to illustrate the role of effective communication of fertility preservation options.

Chapter 5: Fertility Communication and High-Risk Patients begins with the authors, Dr. Jacqueline Jeruss and Natalia C. Llarena, defining high-risk patients.  High-risk patients, are women with a genetic predisposition to breast or ovarian cancer (BRCA1 and BRCA2) who will develop malignancies at a higher rate and younger age than a general population.  Due to this, preventative therapy is indicated before menopause.  Female carriers of BRCA1 and BRCA2 mutations have a 45-65% lifetime risk of developing breast cancer and an 11-39% lifetime risk of developing ovarian cancer.  Women without a known genetic mutation, but who have a strong family history of breast or ovarian cancer, are also at an increased risk.  Their risk can be better calculated through risk assessment tools such as the Gail model.  The Gail model estimates the patient’s 5-year and lifetime risk of developing breast cancer by taking in account the patient’s age, age at menarche, age at first birth or nulliparity, family history in primary relatives, race/ethnicity, number of previous breast biopsies, and number of breast biopsies that yielded atypical cells. Both the Gail model calculation and information relating to known genetic mutations allows clinicians to accurately communicate risk to their patients and present risk-reducing treatment options.

Screen shot 2013-11-20 at 3.23.02 PMSuch risk-reducing options include prophylactic bilateral salpingo-oophrectomy (BSO) and prophylactic mastectomy.  These are recommended to be done after age 35 (but before menopause) or as soon as the patient is finished having children.  However, women with a strong family history of early-onset cancer should consider pursuing surgical intervention at an earlier age.  If surgical intervention is not elected at the time, patients are recommended to undergo antiestrogen treatment with tamoxifen which offers considerable therapeutic benefit.  Unfortunately, tamoxifen is a teratogen and pregnancy should be avoided during the duration of treatment; typically 5-10 years.  Each of these risk-reducing strategies should be comprehensively discussed during the patient’s initial high-risk consultation after reviewing the patient’s medical history, and childbearing and lactation history.  Many clinicians have indicated that basic questions, such as “Were you thinking about having a child?” or “Were you planning on having more children?” can help initiate the conversation about fertility implications.

Fertility concerns are a major factor for high-risk patients when selecting deciding on cancer risk management.  Fertility preservation options have the potential to influence patients’ selection for risk-reducing strategies and when to pursue risk reduction.  As such, it is critical for clinicians to educate patients on their options for fertility preservation early in the process of cancer risk management.  The chapter continues on to present two case studies: one where the female patient declined fertility preservation and the other where the female patient elected to undergo fertility preservation.  High-risk patients face complex decisions about how to prioritize preventative treatment, childbearing, and breastfeeding.  Physicians are faced with the ongoing challenge of ensuring that high-risk patients understand their cancer risk and are adequately informed of their options for preventative treatment and fertility preservation.

Review Chapter 5 of Oncofertility Communication today and review additional case studies through the Oncofertility Consortium‘s Virtual Grand Rounds.

Northwestern Designated a Young Adult Oncology Center of Excellence

Screen Shot 2013-11-15 at 8.58.27 AMMore than 72,000 adolescents and young adults (AYA) between 15 and 39 are diagnosed with cancer each year in the U.S. While survival rates for pediatric and older cancer patients have increased over the past two decades, AYA survival rates have seen little or no improvement. Fortunately, clinical care can help to improve these rates. The Robert H. Lurie Comprehensive Cancer Center at Northwestern was just designated a Center of Excellence, indicating its superior care for AYA oncology patients .

A variety of factors may contribute to poorer outcomes in these patients. These include limited or delayed access to care which may be caused by a lack of health insurance, among other factors. Once young adults do see a practitioner, it often takes health care providers a longer time to diagnose AYAs than patients of other ages. In addition, there is inconsistency in the quality of cancer treatment, follow-up care, and psychosocial and support services for AYAs. Finally, adolescents and young adults have historically participated in clinical trials less than pediatric and older cancer patients, which may also prevent an understanding of the best medicine to treat this unique population.

To address these disparities in cancer treatment, AYA oncology leaders need to ensure that AYA patients are provided with a core group of care and information, including fertility counseling, health insurance and financial counseling, clinical trail education and facilitation, psychosocial support, and assistance to surveillance and survivorship.  The Health Care Right Initiative, which addresses the critical issues patients and their physicians face when dealing with a health crisis, has launched the Change it Back Centers of Excellence Program to facilitate the expansion of needed services to the AYA cancer population and increasing awareness about available services to patients and their families.

The Robert H. Lurie Comprehensive Cancer Center at Northwestern received its designation last week at the annual conference of Critical Mass: The Young Adult Cancer Alliance. It is only one of two centers with this important recognition. The Knight Cancer Institute at Oregon Health Sciences University is the only other center with this honor. Together these two institutions are transforming cancer care for young patients to provide them with increased survival and quality-of-life throughout survivorship.

Read about the fertility preservation program at Northwestern.

Sexual Health, Fertility, and Intimacy in Adolescent Cancer Patients

Adolescent and young adult cancer patients face unique social, physical, and emotional experiences during diagnosis and treatment that may not occur in younger or older individuals. A recent chapter in the book, Oncofertility Communication: Sharing Information and Building Relationships across Disciplines, highlights some of these complexities, which were identified from group interviews of young adult survivors of childhood cancer. The authors, Karrie Ann Snyder and Alexandra Tate, discuss that these female cancer survivors deal with some issues that have not previously been identified in adult populations.

The chapter, Cancer-Related Infertility and Young Women: Strategies for Discussing Fertility Preservation, describes the themes that emerged from group interviews of female cancer survivors who were between 14 and 20 at the time of diagnosis. At the time of the focus groups, these women ranged from 25 to 35 and were able to provide perspectives about their treatment at the time of diagnosis and as survivors. During treatment, many of the respondents were concerned with surviving their cancer, appearance, and social issues such as friendships, relationships, and school. While some of the young women do remember hearing about the potential fertility impacts of cancer treatment, others did not. In addition the women who did hear about fertility felt that the information was vague and did not include specific information about potential fertility preservation options.

Snyder and Tate also identify that there has been little research on the consultations that occur between healthcare providers and young cancer patients regarding sexual health and intimacy. Given that cancer survivors may erroneously believe they are unable to have children, these conversations, especially to teens, are integral. Most of the women interviewed did not recall any discussions with healthcare providers and the discussions that were initiated tended to focus purely on the need to prevent pregnancy and did not discuss sexual needs, building romantic relationships, feeling desirable, or other aspects of intimacy that are often important to young people.

In addition to asking survivors about their experiences, the focus groups also investigated strategies for broaching fertility preservation with newly diagnosed patients. Healthcare providers, such as Fertility Preservation Patient Navigators, can provide support for fertility preservation patients by discussing options, liaising with the oncology team, and assisting with billing and insurance issues. Snyder and Tate call for an increased dialogue between providers and adolescent patients, which will empowers young women to become an active part of their treatment plan and their sexual health as cancer survivors. To read more about the communication needs in oncofertility, read this chapter or others in Oncofertility Communication: Sharing Information and Building Relationships across Disciplines.

Page 5 of 55« First...34567...102030...Last »
 
© Oncofertility Consortium Blog