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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.

Oncofertility: Education and the Role of Decision-Making Tools

978-1-4614-8234-5 (1)Education materials, whether in print or web-based, have a large role in helping patients feel confident in their medical decision-making.  Continuing with our overview of Oncofertility Communication: Sharing Information and Building Relationships across DisciplinesChapter 3 focuses on the importance of education, and the role of decision-making tools, within the Oncofertility community.  The authors, Dr. Gwendolyn P. Quinn, Dr. Susan T. Vadaparampil, Ivana Sehovic, MPH, and Dr. Marla L. Clayman outline that the majority of adolescent young adult patients choose not to take steps to preserve fertility but overwhelmingly appreciate the discussion about potential fertility issues.  But how does a cancer patient make the decision of whether or not to pursue fertility preservation?  Chapter 3, Patient and Family Tools to Aid in Education and Decision-Making About Oncofertility, dives into the three components of decision-making, (1) risk appraisal (2) information integration and (3) long-term considerations.

Risk appraisal includes not only physical risks such as the effect of treatment delay on cancer outcomes and the risks associated with the fertility preservation procedures themselves, but also the psychological risks.  How will the patient feel if she is unable to have biological children and did not take steps to preserve her fertility?  Risk appraisal often goes hand-in-hand with the second component of decision making; information integration.  This involves the patient processing information about fertility preservation options, medical procedures, associated costs, as well as religious, ethical or moral concerns about these options.  The third component, long-term considerations,  relates to retrieving the stored sperm, embryos, oocytes or tissue.  How will the patient feel about using artificial reproductive technology to achieve a pregnancy?  How will their partner feel about having a child with donor sperm or eggs?

Patients facing such complex fertility preservation decisions can benefit from the use of decision aids.  The International Patient Decision Aids Standards (IPDAS) criteria for what constitutes a patient decision aid are quite specific .  The aids must 1) provide facts about the patient’s condition, options and features, 2) help people clarify their values (the features that matter most to them), and 3) help people share their value with their healthcare practitioner and others.

Chapter 3 provides examples of quality decision-making tools, ranging from Oncofertility Screen shot 2013-11-08 at 2.49.43 PMbooklets to websites such MyOncofertility.org.  These represent decision-making tools that were developed with multidisciplinary teams and with a scientific approach.  While these are, in no way, a replacement for a discussion with a medical professional, decision-making tools can offer patients and their families peace of mind about their choices.

Take the time to review  Chapter 3 of Oncofertility Communication and share with your colleagues.  If you have decision-making tools in your clinic or office, consider reviewing them based on the criteria outlined by IPDAS and see if they need to be edited or clarified for patients.  And please continue to explore the Oncofertility Consortium website for available brochures and information for clinicians and patients alike.

Communicating Across Diverse and Differently Literate Audiences

Screen shot 2013-10-30 at 4.09.44 PMWe can all remember a time when we have received medical information from our doctor and have walked away with little or no comprehension of what was discussed.  The second chapter in Oncofertility Communication: Sharing Information and Building Relationships Across Disciplines is entitled Communicating Across Diverse and Differently Literate Audiences and the authors, Drs. Jennifer Mersereau and Anna R. Brandon, address the challenges faced by clinicians and patients when discussing complicated medical issues.

Language barriers in medicine is an ongoing challenge as medical information is typically delivered in English while the US Census Bureau indicates that approximately 21% of the population speaks a language other than English at home.  While the language barrier seems simple to overcome, adapting information in a way that is sensitive to language and cultural differences can be very expensive and resource-intensive.  Fertility preservation is such a complex field, with overlap between medicine, embryology and statistics that much is literally ‘lost in  translation’ when communicating information to non-English speakers.  While waiting for access to adapted fertility preservation documents and websites geared towards different languages and cultures, clinicians do the best they can with the information available to them while remaining sensitive to unique cultural beliefs about cancer and treatment choices.

One way for clinicians to assist their patients in understanding information is to provide educational materials for review at home.  Educational materials geared towards lower level literacy are paramount in successful retention of information; especially in institutions that do not have a dedicated fertility preservation patient navigator to help the patient and family through their journey.  In addition to hard copy documents that clinicians will physically hand to the patient, Chapter 2 outlines methods for improving online access to similar educational materials by suggesting that websites ‘layer content’ which increases usability of the sites by allowing users at various literacy levels to utilize the site in a way and at a pace that is appropriate.

These are just a handful of examples of the information available in this chapter.  The further you dive into Oncofertility Communication, the more you will understand the complexity of the issues at hand.  While Chapter 2 specifically outlines the communication challenges faced by patients and clinicians alike, it also offers suggestions and recommendations for addressing these issues and advancing the field.  Please take the time to review Oncofertility Communication: Sharing Information and Building Relationships Across Disciplines and discuss with your colleagues.  The Oncofertility Consortium is always available to answer questions at the FERTline (866)708-3378 or oncofertility@northwestern.edu.

Announcing new Book on Oncofertility Communication: Sharing Information and Building Relationships across Disciplines

978-1-4614-8234-5 (1)Since the initiation of the “war on cancer” with the National Cancer Act in 1971, cancer survivorship has increased dramatically. As such survivors, especially young ones, frequently live many decades beyond their initial cancer diagnosis. With the escalating numbers of cancer survivors, comes the need to provide cancer treatment in a way that ensures a healthy and hopeful future. Since 2007, the Oncofertility Consortium has aimed to do that by exploring and expanding the reproductive future of survivors through research, clinical care, and facilitating the collaboration required to ensure that patients receive multi-disciplinary care in a time sensitive manner. To support that mission, the Oncofertility Consortium has just published the fourth book produced by the group, Oncofertility Communication: Sharing Information and Building Relationships across Disciplines. The book, published by Springer, describes the corridors of collaboration between disciplines that are needed to bridge fields that are not traditionally used to talking with each other – e.g. oncologists, reproductive scientists, and others. The book also provides communication strategies to ensure that each discovery in our field can be broadly disseminated.

Over the next few weeks, we hope to give you a glimpse within the book’s chapters, which provide examples and information about communicating to patients and their families, and professionals, stakeholders, and the public.

The first chapter in the book, “How Do Cancer Patients Learn About Fertility Preservation? Five Trajectories of Experience,” discusses the results of more than 60 interviews with breast cancer survivors. In addition to asking whether women remember having a discussion with a healthcare provider during their cancer treatment, the authors Karrie Ann Snyder and William Pearse, identify how the discussion occurred, the quality of that discussion, and the properties that appear to affect such conversations. The authors identify that physician (usually an oncologist) interest and knowledge, existing network with fertility specialists facilitated patient-provider discussions. In addition, patient knowledge and agency in their healthcare decision-making also had an effect on the discussions. Interestingly, differences in perceived social status – such as education, race/ethnicity, and socioeconomic position – may also affect the presence and quality of fertility preservation discussions during the cancer treatment process.

As important as the properties are that do affect discussions, are the variables that seem to have no effect. Unexpectedly, Snyder and Pearse identify that patient age and the patients’ perception of the relationship with her physician did not seem to impact the discussions. The information identified by this study, is critical to raising awareness of the need to improve communication between clinicians and patients. Read the  chapter “How Do Cancer Patients Learn About Fertility Preservation? Five Trajectories of Experience,” and other chapters in Oncofertility Communication: Sharing Information and Building Relationships across Disciplines and disseminate them within your community.

The Stupid Cancer Show: Perspectives on Life after Cancer

Screen shot 2013-10-15 at 1.53.47 PMHere at the Oncofertility Consortium, we’re huge fans – both personally and professionally – of Matthew Zachary, the force behind Stupid Cancer; the nation’s largest support community of young adult survivors of cancer.  Created in 2004 (first as Steps for Living, then transitioning into I’m Too Young For This! Cancer Foundation, and now Stupid Cancer), it has grown into a powerhouse resource for young cancer survivors; giving them a platform for their issues, creating a community of young adult cancer patients and survivors, and putting them in the national spotlight.

One of Stupid Cancer‘s wide-reaching programs, is The Stupid Cancer Show; an award-winning international talk show that gives a voice to millions of children, teens, and adults affected by cancer.  Their September 30, 2013 show invited listeners to learn more about Adult Survivors of Childhood Cancer.  I don’t want to give too much away – because the show is definitely worth listening to – but you will meet Michelle Whitehead-Hastings, a young wife and mother currently battling stage-4 colon cancer.  She discusses the road to her diagnosis, treatment, remission, and recurrence and how she communicates with her young children about her cancer.  Up next, Colleen Cira, a survivor of pediatric cancer, discusses long-term effects of treatment, including fertility issues, and outlines her experience with programs offered at Northwestern.  From there, you will be given insight into the clinical side of fertility preservation and cancer survivorship from Northwestern’s Fertility Preservation Patient Navigator, Kristin Smith, and Clinical Nurse Specialist, Karen Kinahan, RN, from the Robert H. Lurie Comprehensive Cancer Center of Northwestern University‘s comprehensive follow-up STAR-Program for adult survivors of childhood cancer.  Both women are instrumental in assisting our patients through the cancer continuum.

The unique stories and perspectives shared during The Stupid Cancer Show allows listeners to learn about the challenges faced by patients diagnosed with cancer, those who have transitioned into survivorship, and the clinicians and hospital staff that are with them at each step.  Click here to listen to The Stupid Cancer Show highlighting the Oncofertility Consortium‘s own Kristin Smith and Karen Kinahan, RN.

After listening to The Stupid Cancer Show, I invite you to view Virtual Grand Rounds by Karen Kinahan, RN titled Adult Survivors of Childhood Cancer and Fertility.  For questions regarding fertility preservation options in cancer patients, please contact the FERTline at (312) 503-3378.

Celebrate and Advocate: Breast Cancer Awareness Month

Screen shot 2013-10-10 at 2.31.33 PMAs I’m sure you already know, October is National Breast Cancer Awareness Month.  The nation is awash in the color pink and adorned with pink ribbons.  Everywhere we turn we see information about breast cancer signs and symptoms, early detection, and treatment options.  This alone is reason to celebrate.  Breast cancer is no longer something that is whispered about in secrecy but rather discussed in the open with friends and strangers alike.

Even with increased awareness, breast cancer remains the leading cancer diagnosis in females proving that there is still much work to be done.  There are large advocacy organizations paving the way through research grants and education programs (organizations like Lynn SageSusan G. Komen, American Cancer Society, National Breast Cancer Coalition, National Breast Cancer Foundation, and Avon Foundation) but in recent years, we’ve seen a surge of more focused organizations.  These newer organizations are geared towards young women (with cancer or at a high risk), minorities, and more aggressive breast cancer types.  These organizations have created networks of support for populations of women who may have previously felt left out of the breast cancer conversation.

Young women can reach out to Bright Pink; a national organization focused on risk reduction and early detection of breast and ovarian cancer in young women.  African American women can connect through Sisters Network, Inc; an organization committed to increasing attention to the devastating impact that breast cancer has in the African American community. Latinas in Chicago can access ALAS-WINGS, an organization dedicated to empowering Hispanic women about breast cancer awareness. Women diagnosed with triple-negative breast cancer (tumors that are negative for all three ‘receptors’ known to fuel most breast cancers: estrogen, progesterone, and human epidermal grown factor receptor 2 (HER2)) can find support through the Triple Negative Breast Cancer Foundation.  And the Metastatic Breast Cancer Network is dedicated to raising awareness of metastatic breast cancer and giving these women greater visibility in the community-at-large.

Each organization, large or small, makes the effort to give patients and caregivers a place to find support and educational resources during the cancer journey.  Every October, we’re reminded to celebrate the progress made in the fight against breast cancer and advocate for further advances.

I invite you to visit the organizations highlighted here as well as find upcoming breast cancer awareness events in your own community.  If you happen to be in Chicago, look around the city for pink ribbons, banners, and lights for October’s Light the Way to Find a Cure, to raise awareness for the Lynn Sage Cancer Research Foundation in partnership with Northwestern Memorial Hospital and the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

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