Gwendolyn P. Quinn

Discussion of fertility preservation with newly diagnosed patients: oncologists’ views

IntroductionAlthough physician discussion with patients regarding fertility preservation (FP) options prior to cancer treatment can provide important information for survivors concerning their future fertility, little is known about the extent to which physicians discuss FP with patients. This qualitative study sought to identify current physician FP communication practices and determine factors that may impact communication efforts regarding FP.Materials and methodsQualitative data were collected using semi structured interviews with 16 physicians practicing at a major cancer center in the South.ResultsAll providers were board certified in medical oncology, radiation oncology or surgical oncology. The main factors that emerged from qualitative analysis included distinct variations in quality of discussion about FP, knowledge of FP resources, attitudes, practice behaviors and perceptions of patient characteristics.DiscussionWhile most physicians discussed potential fertility loss as a side effect of cancer treatment, few provided information to patients about preserving fertility. Patient characteristics such as gender and cancer site may impact the discussion, as well as system factors such as costs of procedures and access to FP resources. Education and training for physicians about FP options for cancer patients, particularly females, may promote discussion of FP. In addition, system barriers related to availability and affordability of FP resources must also be addressed.Implications for cancer survivorsPhysicians should consider providing patients with timely, understandable information related to their FP options, prior to the administration of treatment. Such discussions may lead to improved quality of life for individuals as they transition from patients to survivors.

Fertility Preservation and Adolescent/Young Adult Cancer Patients: Physician Communication Challenges

PURPOSE The doctor-parent-adolescent triad is a unique communication challenge, particularly in the area of fertility preservation for adolescents with cancer. This paper provides a preliminary exploration into the barriers experienced by physicians in discussing cancer related fertility issues with patients aged 12-18. METHODS This study used a subset of the data from qualitative interviews with pediatric oncologists. RESULTS The majority of physicians agreed that fertility preservation conversations were awkward because of limited options and resources for the technology as well as the existence of a fine line between establishing a sense of trust between doctor and patient, while not excluding parents. CONCLUSIONS Healthcare providers need training on how and when to broach fertility issues with patients, emphasizing open communication and early disclosure.

Who Decides? Decision Making and Fertility Preservation in Teens With Cancer: A Review of the Literature

PURPOSE The knowledge that cancer treatment may impair fertility in pediatric populations is an emerging aspect of quality of life in this population. However, decision making and use of fertility preservation (FP) among adolescent cancer patients and their families has not been well studied. This review summarizes the available published data on aspects of decision making and FP in adolescent cancer patients. METHODS An electronic search was performed to identify peer-reviewed studies published between 1999 and 2009 using key Medical Subject Heading terms and inclusion criteria. Inclusion criteria limited eligible studies to those that focused on adolescent decision making in cancer treatment or FP, fertility concerns in pediatric oncology, capacity for decision making, and health decision making in pediatrics. Studies that did not meet at least one of these criteria were excluded. RESULTS A total of 29 articles were reviewed and summarized. Three categories of results were seen: a focus on adolescent decision making in oncology, decision making in chronic illness, and decision making in cancer-related infertility and preservation. CONCLUSION Most of the studies showed that adolescents have a strong desire to participate in decisions related to their cancer treatment and many have concerns regarding their future fertility, although barriers often prevented these discussions. More research is needed to explore the role of teenagers and parents in decisions about fertility in relation to cancer treatment.

Attitudes of high-risk women toward preimplantation genetic diagnosis

OBJECTIVE To explore the knowledge and attitudes toward preimplantation genetic diagnosis (PGD) of women who have been personally affected by hereditary breast and ovarian cancer. DESIGN A 33-item quantitative survey covering five domains, including demographics, knowledge and attitudes about PGD, usage of PGD, and informational needs. SETTING Attendees of a national conference for individuals and families affected by hereditary breast and ovarian cancer participated in the survey. PATIENT(S) Not applicable. INTERVENTION(S) Not applicable. MAIN OUTCOME MEASURE(S) Frequencies and proportions were summarized for all variables, and Fishers exact tests were conducted to test association between two discrete variables. RESULT(S) Of the women surveyed, only 32% had ever heard of PGD before taking the survey. None of the women surveyed had actually used PGD, and 44% believed they would not use it in the future. However, 57% of attendees believed that PGD was an acceptable option for high-risk individuals, and 74% believed that high-risk individuals should be given information about PGD. CONCLUSION(S) Health care professionals who serve cancer patients should consider incorporating information about PGD into patient education. Further research is needed to survey physicians and genetic counselors about their knowledge and opinions of PGD.

Cancer and lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) populations.

This article provides an overview of the current literature on seven cancer sites that may disproportionately affect lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) populations. For each cancer site, the authors present and discuss the descriptive statistics, primary prevention, secondary prevention and preclinical disease, tertiary prevention and late‐stage disease, and clinical implications. Finally, an overview of psychosocial factors related to cancer survivorship is offered as well as strategies for improving access to care. CA Cancer J Clin 2015;65:384–400.

Infertility in reproductive-age female cancer survivors

Improved survival rates among reproductive‐age females diagnosed with cancer have increased the focus on long‐term quality of life, including maintenance of the ability to conceive biological children. Cancer‐directed therapies such as high‐dose alkylating agents and radiation to the pelvis, which deplete ovarian reserve, radiation to the brain, which affects the hypothalamic‐pituitary‐gonadal axis, and surgical resection of reproductive structures can decrease the likelihood of having biological children. Standard fertility preservation strategies such as embryo and oocyte cryopreservation before the onset of therapy offer the opportunity to conserve fertility, but they may not be feasible because of the urgency to start cancer therapy, financial limitations, and a lack of access to reproductive endocrinologists. Ovarian tissue freezing is considered experimental, with limited data related to pregnancies, but it minimizes treatment delay. Studies evaluating gonadotropin‐releasing hormone analogues have had mixed results, although a recent randomized, prospective study in women with breast cancer demonstrated a protective effect. Fertility preservation programs are increasingly being developed within cancer programs. In this article, we describe risks to infertility and options for preservation, raise psychosocial and ethical issues, and propose elements for establishing an effective fertility preservation program. Cancer 2015;121:1532–1539.

Psychosocial issues related to sexual functioning among African‐American prostate cancer survivors and their spouses

Objective: Focus on cancer survivorship and quality of life (QOL) is a growing priority. The aim of this study was to identify and describe the most salient psychosocial concerns related to sexual functioning among African‐American (AA) prostate cancer survivors and their spouses.

Communication and consumer decision making about cancer clinical trials

Communication between patients and physicians likely mediates traditional patient and physician predispositions in determining patient outcomes, including perceptions and decision making. However, the extent to which a mediating effect occurs is unclear. The purpose of this essay is to outline the need for conceptualizing more holistic models of consumer-provider interaction that demonstrate the role of the therapeutic relationship in treatment outcomes. We focus on an important communicative context for exploring this question: the situation where patients, with the help of oncologists, are faced with making treatment choices, particularly whether to enroll in a clinical trial in response to their life-threatening cancer diagnosis. We explore the question from the perspectives of the medical provider, the patient, and the accompanying family member, in order to better frame the complex interactional dynamics occurring during the interaction.

The need for reproductive and sexual health discussions with adolescent and young adult cancer patients

Reproductive health consistently ranks as one of the most important issues cited by adolescent and young adult (AYA) cancer survivors. Most literature on AYA cancer populations neglects broader reproductive health issues such as unintended pregnancies, contraception use and sexually transmitted infections, which, for cancer patients and survivors with compromised immune systems, can facilitate a multitude of future health problems. Lack of attention coupled with traditional risk-taking behaviors of AYAs poses a significant health risk to patients and survivors, particularly if fertility status is unknown or inaccurately assessed. AYA oncology patients and survivors are vulnerable to reproductive health complications that should be addressed prior to, during and after treatment; however, there are currently no tracking systems or evidence-based guidelines to discuss this subject with patients and survivors. Further research is needed to identify physician practices, AYA preferences and strategies for communication that can pave the way to establishing guidelines to discuss in oncology settings.

Awareness, Perceptions, and Provider Recommendation Related to Genetic Testing for Hereditary Breast Cancer Risk among At-Risk Hispanic Women: Similarities and Variations by Sub-Ethnicity

This study explored awareness of risk factors for hereditary breast and ovarian cancer (HBOC), awareness, knowledge and concerns about genetic testing, and preference for how to have genetic testing recommended by a care provider among at-risk Hispanic women. Differences in these factors among Mexican, Cuban, and Puerto Rican women were also examined. Women with a personal or family history of breast or ovarian cancer from the Tampa Bay Area participated in a qualitative interview (N = 53). Data were analyzed using a combination of open and axial coding with a grounded theory approach. Study participants in all groups reported: being aware that family history was a breast cancer risk factor, limited knowledge of genetic testing, fear of test results, concerns about children’s risks, and no physician referral for genetic testing. Noteworthy sub-ethnic differences included preferences for physician recommendation and information about genetic testing. This study provides important preliminary information about areas related to HBOC that require additional education in the Hispanic community as a whole and by sub-ethnicity.