Faculty Bibliography

BACKGROUND: Little is known about barriers to Hereditary Breast and Ovarian Cancer (HBOC) genetic counseling among Puerto Rican women. OBJECTIVE: This study reviews existing literature to identify individual, interpersonal, and systems level factors that may impact the use of HBOC genetic services among Puerto Rican women living in the United States. METHODS: A systematic search of articles published between the years 1995-2014 was performed in PubMed and ISI Web of Science. Additionally, the bibliography of relevant articles was reviewed for additional potential articles. RESULTS: Individual level barriers most frequently identified included: a lack of knowledge or awareness about HBOC or genetic counseling and testing, and facilitators included high levels of interest in genetic counseling/genetic testing. Interpersonal level barriers included worry about knowing a family member's risk, and conversely, a facilitator was the ability to help family members. Systems level barriers included concerns about the cost, having competing life demands, whereas facilitators included holding private insurance. CONCLUSION: Puerto Rican women are a unique ethnic minority group with specific perceptions, beliefs and levels of education about genetic counseling and testing for HBOC. Addressing individual, interpersonal and systems level factors unique to this group may improve knowledge and awareness. Policy and structural changes may be needed to improve system level barriers.

BACKGROUND: Childlessness is a major public health concern in the United States, particularly among educated adults. Among women who turned 45 in 2006, one fifth had no children. We examine the likelihood that a childless woman wants a baby sometime in the future and its determinants. METHODS: From 2006 to 2010, 5,410 in-person interview surveys were conducted with childless women as part of the National Survey of Family Growth. Age-specific likelihoods of wanting a baby were compared with likelihoods of having a baby before age 45. Female respondents were 1) born after 1960, 2) age 15 to 44, 3) childless (never given birth to a live infant), and 4) not pregnant at time of interview. FINDINGS: Most childless women at any age want a baby sometime in the future. By age 32, fewer than half the childless women who want a baby will have one. At age 39, the majority of childless women (73%) still want a baby someday, but only 7% will have one. By age 45, more than 1 in 10 women will be childless, but still want to have a baby. CONCLUSIONS: Although attitudes toward childlessness have become more positive over time, our findings suggest that the United States is experiencing a high prevalence of childless women who want a baby. Clinicians may consider counseling young women about age-related declines in fertility and the costs and success rates of assisted reproductive technologies often required for women with advanced maternal age to better inform their career, family, and lifestyle decisions.

BACKGROUND: Hispanic cancer patients are underrepresented in clinical trials; research suggests lack of knowledge and language barriers contribute to low accrual. Multimedia materials offer advantages to Hispanic populations because they have high acceptability, are easy to disseminate, and can be viewed with family. PURPOSE: Hispanic cancer patients and caregivers participated in focus groups to aid in developing a Spanish-language multimedia intervention to educate Hispanic cancer patients about clinical trials. We explored the feasibility of delivering the intervention in medical oncology clinics. METHODS: A total of 35 patients were randomized to either the multimedia intervention group (n = 18) or a control group (n = 17) who were asked to read the National Cancer Institute's Spanish-language clinical trials brochure. Self-reported data on knowledge about and attitudes toward clinical trials, self-efficacy for participating in a clinical trial, intention to participate in a clinical trial if asked, and receptivity to information about a clinical trial were collected at baseline and 10 days later. RESULTS: Delivery of the multimedia presentation in oncology clinics was feasible. The intervention group had more knowledge about clinical trials at follow-up than the control group; scores for intention to participate in a clinical trial by participants in the intervention group increased from 3.8 to 4.0 of a possible 5, but declined in the control group from 4.5 to 4.1. No statistically significant difference was detected between groups in scores for attitudes or self-efficacy for making a decision to participate in a clinical trial. LIMITATIONS: Our sample size was inadequate to identify differences between the informational methods. Although all patients were asked about their willingness to participate in a clinical trial, this decision was hypothetical. In addition, the study was conducted with a sample of Spanish-speaking Hispanic cancer patients at a comprehensive cancer center in Florida. Thus, the results may not generalize to other Hispanic populations. CONCLUSION: In the pilot project, we demonstrated the feasibility of delivering multimedia information to patients in medical oncology clinics. Because delivery in a clinical setting was found to be feasible, a larger study should be conducted to evaluate the efficacy of the multimedia intervention with respect to promoting accrual of Hispanic patients to clinical trials.

INTRODUCTION: In September 2007, Northwestern University's Feinberg School of Medicine received a $21.1 million dollar, 5-year grant from the National Institutes of Health to fund the Oncofertility Consortium (OFC). Over the course of the grant, those engaged with the psychological, legal, social, and ethical issues arising from oncofertility provided recommendations to the OFC. The inclusion of serious, real-time consideration of ethical issues as a funded focus of the grant and the work of scholars in law, bioethics, and economics was a key part of the process of research. Now that this grant has ended, this commentary points to some of the issues that came forward during the 5 years of this project. Because of the emerging status of oncofertility, these issues are ones that need continued discussion and clarification, prompting our call for an oversight mechanism to provide guidance for how this technology should proceed. METHODS: An initial draft of this commentary arose from notes taken during a small colloquium held to discuss the oversight of oncofertility following the conclusion of the grant. This colloquium occurred in the fall of 2011. Using these notes as a starting point, the draft was then sent to other researchers who had been involved with the OFC in considering the psychological, legal, social, and ethical issues related to fertility preservation for cancer patients during the course of the grant. Finally, this commentary was further framed by the authors' review of existing published and gray literature regarding issues concerning fertility preservation for cancer patients. RESULTS: We provide several points to consider and then offer two suggestions for an oversight mechanism for research as it continues. DISCUSSION/CONCLUSIONS: We assert the need not just for guidelines for the clinical practice of oncofertility, but also for oversight of the scope of this emerging technology because of its profound implications. We recognize that many long to a have a child and form a family and that, for some, cancer interrupts this path. With the conclusion of this grant, we call for the creation of a permanent oversight mechanism to thoughtfully and earnestly consider how to guide oncofertility to allow this emerging technology to be carefully considered as it develops. IMPLICATIONS FOR CANCER SURVIVORS: The circumstances in which fertility preservation should be discussed and the patients for whom fertility preservation would be most suitable are important guideline issues for people who survive cancer and for their treatment team. Oversight of the field of oncofertility would strengthen the rights of cancer patients and help protect them from abuses as well as alert health care professionals to their correlative duties to these vulnerable patients and families.

PURPOSE: To update guidance for health care providers about fertility preservation for adults and children with cancer. METHODS: A systematic review of the literature published from March 2006 through January 2013 was completed using MEDLINE and the Cochrane Collaboration Library. An Update Panel reviewed the evidence and updated the recommendation language. RESULTS: There were 222 new publications that met inclusion criteria. A majority were observational studies, cohort studies, and case series or reports, with few randomized clinical trials. After review of the new evidence, the Update Panel concluded that no major, substantive revisions to the 2006 American Society of Clinical Oncology recommendations were warranted, but clarifications were added. RECOMMENDATIONS: As part of education and informed consent before cancer therapy, health care providers (including medical oncologists, radiation oncologists, gynecologic oncologists, urologists, hematologists, pediatric oncologists, and surgeons) should address the possibility of infertility with patients treated during their reproductive years (or with parents or guardians of children) and be prepared to discuss fertility preservation options and/or to refer all potential patients to appropriate reproductive specialists. Although patients may be focused initially on their cancer diagnosis, the Update Panel encourages providers to advise patients regarding potential threats to fertility as early as possible in the treatment process so as to allow for the widest array of options for fertility preservation. The discussion should be documented. Sperm and embryo cryopreservation as well as oocyte cryopreservation are considered standard practice and are widely available. Other fertility preservation methods should be considered investigational and should be performed by providers with the necessary expertise.

PURPOSE: Young adult survivors of childhood cancer (YASCC) are an ever-growing cohort of survivors due to increasing advances in technology. Today, there is a shift of focus to not just ensuring survivorship but also the quality of survivorship, which can be assessed with standardized instruments. The majority of standardized health related quality of life (HRQoL) instruments, however, are non-specific to this age group and the unique late effects within YASCC populations. The purpose of this study was to investigate the relevance and accuracy of standardized HRQoL instruments used with YASCC. METHODS: In a previous study, HRQoL items from several instruments (SF-36, QLACS, QLS-CS) were examined for relevance with a population of YASCC. Participants (n = 30) from this study were recruited for a follow-up qualitative interview to expand on their perceptions of missing content from existing instruments. RESULTS: Respondents reported missing, relevant content among all three of the HRQoL instruments. Results identified three content areas of missing information: (1) Perceived sense of self, (2) Relationships, and (3) Parenthood. CONCLUSIONS: Existing HRQoL instruments do not take into account the progression and interdependence of emotional development impacted by a cancer diagnosis. The themes derived from our qualitative interviews may serve as a foundation for the generation of new items in future HRQoL instruments for YASCC populations. Further testing is required to examine the prevalence, frequency, and breadth of these items in a larger sample.

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.

There is a dearth of Spanish language, culturally relevant tobacco-related information available to Hispanics in the USA. The primary aim of this study was to examine the distribution process of Libres para Siempre (Forever Free), a Spanish language smoking relapse prevention booklet series, by health care and social service agencies serving Hispanic individuals in Florida. Representatives (N = 16) from ten agencies that requested copies of the booklets completed a semi-structured interview to assess strategies used to distribute the booklets to their Hispanic clients. As a secondary aim, we obtained feedback regarding the booklets' quality and utility from the representatives. Results revealed that many agencies used both active and passive approaches to distribute the booklets. Issues related to distribution included language barriers between staff and clients and confusion regarding identification of the target population. Results indicated that the booklets were received favorably, and providers would recommend them to future clients.