Faculty Bibliography

Compared with previous generations in the United States, men today are starting families later in life and having fewer children. As a result birthrates in the United States have dropped sharply, and some men never make the transition into parenthood. Using data from the 2006-2010 National Survey of Family Growth, this study examines the characteristics of childless men in the United States between the ages of 15 and 44 (N = 6,168) and whether these men want to have a child sometime in the future. Our main finding is that the majority of childless men want a child someday; however, by the age of 45 more than 1 in 7 still remain childless.

In 2008, approximately 69,200 adolescents and young adults (AYAs) were diagnosed with cancer, second only to heart disease for males in this age group. Despite recent guidelines from professional organizations and clinical research that AYA oncology patients want information about reproductive health topics and physician support for nurses to address these issues with patients, existing research finds few oncology nurses discuss this topic with patients due to barriers such as lack of training. This article describes an innovative eLearning training program, entitled Educating Nurses about Reproductive Issues in Cancer Healthcare. The threefold purpose of this article is to: (1) highlight major reproductive health concerns relevant to cancer patients, (2) describe the current status of reproductive health and oncology communication and the target audience for the training, and (3) present a systematic approach to curriculum development, including the content analysis and design stages as well as the utilization of feedback from a panel of experts. The resulting 10-week curriculum contains a broad-based approach to reproductive health communication aimed at creating individual- and practice-level change.

PURPOSE: The goal of this study was to determine healthy adolescents' perceptions of cancer and fertility. A secondary goal of the study was to test items related to the development of a health-related quality-of-life tool with healthy control subjects to determine whether the participants shared a common understanding of the items and response options and to confirm face and content validity. METHODS: Four focus groups of two age-groups were held with healthy female adolescents: 12-14 years (N = 11) and 15-18 years (N = 14). RESULTS: Adolescents in both age-groups expressed significant concerns regarding potential infertility from cancer treatment, hereditary transmission, and the impact it would have on their future. Differences emerged in language preferences among older adolescents who preferred more open-ended statements. CONCLUSIONS: Fertility concerns and desires for future motherhood can be accurately assessed using the 10 statements tested, and clinicians should be made aware of the differences between younger and older adolescents to facilitate effective communication. This research suggests adolescents have predetermined expectations for becoming future parents, and their concerns about fertility and childbearing are present before becoming a patient.

Rapid autopsy or rapid tissue donation (RTD) is a novel method of tissue procurement in which 'fresh' tissue is collected within 2-6 h following the death of a patient. While the use of RTD offers many opportunities to develop new therapies for lung cancer patients, it raises ethical concerns. The purpose of this study was to examine knowledge, perceptions and ethical concerns about recruiting patients for an RTD program. To achieve research goals, we conducted six focus groups, each containing 5-10 participants (N = 38). Participants were cancer patients (n = 17) their caregivers (n = 6), physicians (n = 6) and clinic staff (n = 9) from the Thoracic Oncology Program at Moffitt Cancer Center, in Tampa, Florida, USA. All focus groups were audio-recorded and conducted using a semi-structured focus group guide. The transcripts were analyzed using hand-coding methods. Data were coded independently by at least two researchers, and an inter-rater reliability rate of >/=90% was achieved. Knowledge about RTD was low among all groups, with physicians having slightly higher knowledge; all groups agreed that RTD offered major benefits to cancer research; physicians and clinic staff were mainly concerned about making a patient feel uncomfortable and reducing hope, while, patients and family members were more concerned about logistics and how the family would be affected during tissue retrieval. All groups agreed the physician was the appropriate person to begin a discussion about RTD and that recruitment should be individualized. All groups reported that physician training is necessary, as well as an awareness campaign for patients and families to be more receptive about RTD. The results of this study suggested more education is needed for all stakeholders to learn about RTD prior to the initiation of a research program. Our approach of querying all stakeholders provides a firm foundation for future training modules regarding RTD programs in lung cancer.

NCI-designated comprehensive cancer centers (CCCs) set the standard for providing exemplary patient care. Quality cancer care includes discussions about fertility and referrals to fertility specialists for patients at risk for sterility. This study sought to determine what fertility preservation (FP) resources are available in CCCs and how well those are integrated into patient care. Leaders at each CCC received a letter requesting a short telephone interview with individuals who could provide information about the institution's FP resources. A semi-structured interview guide was used and responses were audio-recorded. Data were analyzed using content and thematic analysis. Interviews were conducted with 30 of the 39 CCCs that see adult patients (77%). The remaining institutions included 4 nonresponders, 3 that referred the interviewers to childhood cancer survivorship clinics, 1 that refused, and 1 that could not identify any FP resources. Participants were primarily affiliated with reproductive endocrinology (n=15) or hematology/oncology divisions (n=10). Institutional policies regarding consistent provision of FP information were rare (n=4), although most sites (n=20) either had some services on-site or had referral programs (n=8). However, only 13 had some experimental services, such as ovarian tissue cryopreservation. Respondents reported barriers to provision of FP, including oncologists' identification of patients at risk, low referral rates, and perceptions of patient prognosis. Only 8 (27%) sites had staff with time dedicated to FP. CCCs vary widely in implementing FP-recommended practice to their patients. CCCs are positioned to provide exemplary oncofertility care, but most need to better integrate FP information and referral into practice.

Rapid tissue donation (RTD) is an advancing oncology research procedure for collecting tumors, metastases, and unaffected tissue 2-6 h after death. Researchers can better determine rates of progression, response to treatment, and polymorphic differences among patients. Cancer patients may inquire about posthumous body donation for research to offer a personal contribution to research; however, there are barriers to recruiting for an RTD program. Physicians must reassure the patient that their treatment options and quality of care will not be compromised due to participating in RTD. In this commentary we discuss how theories of altruism may explain cancer patients' desire to participate in an RTD program, the ethical concerns of health care professionals and patients and the use of altruism as a recruitment strategy. We offer recommendations for examining the cultural and ethical climate of the institution prior to initiating such a program such as examining the relationship of healthcare professionals and patients, identifying ethical concerns, and examining ways to promote acceptance and buy-in across professionals, patients, and families.

Physician practice variation may be a barrier to informing hematopoietic cell transplant (HCT) recipients about fertility preservation (FP) options. We surveyed HCT physicians in the United States to evaluate FP knowledge, practices, perceptions and barriers. Of the 1035 physicians invited, 185 completed a 29-item web-survey. Most respondents demonstrated knowledge of FP issues and discussed and felt comfortable discussing FP. However, only 55% referred patients to an infertility specialist. Most did not provide educational materials to patients and only 35% felt that available materials were relevant for HCT. Notable barriers to discussing FP included perception that patients were too ill to delay transplant (63%), patients were already infertile from prior therapy (92%) and time constraints (41%). Pediatric HCT physicians and physicians with access to an infertility specialist were more likely to discuss FP and to discuss FP even when prognosis was poor. On analyses that considered physician demographics, knowledge and perceptions as predictors of referral for FP, access to an infertility specialist and belief that patients were interested in FP were observed to be significant. We highlight variation in HCT physician perceptions and practices regarding FP. Physicians are generally interested in discussing fertility issues with their patients but lack educational materials.

Reproductive technology is advancing at a steadfast pace. Researchers are successfully refining options for fertility preservation, to the benefit of the cancer community. Research has consistently shown cancer patients and survivors desire to have risks to fertility and preservation options disclosed, and major campaigns have been undertaken to refer these patients to fertility specialists. However, the decision to pursue fertility preservation is not an isolated judgment. A variety of future decisions may arise for the individual or couple, choices that may not have been relayed during the initial decision-making process. Future decisions include the length of time to continue to store frozen gametes, donating banked gametes to infertile couples, and whether embryos created with one partner would be accepted by a new partner. It is important to continue the advancement of fertility preservation not only in the scientific milieu, but also in addressing a patient's preparedness for long-term decision making.

BACKGROUND: Independently offered comments on a physician survey may reveal new insight into physician recommendations for human papillomavirus (HPV) vaccination to their patients. The current study is a follow-up to a previous report of free-response comments and describes remarks from the second of two surveys regarding physicians' HPV vaccine recommendation practices. A secondary objective was to investigate comments specific to male HPV vaccination, which was FDA approved after the first survey was completed. METHODS: In 2011, a mailed survey assessing physicians' HPV-related knowledge, attitudes, and vaccination practices was conducted among a national sample of U.S. primary care physicians, including Family Physicians, Pediatricians, and Obstetricians/Gynecologists. Comments were analyzed using grounded theory and content analysis. FINDINGS: Of 928 completed surveys received, 134 participants provided comments, which were coded into four overall categories: 1) the survey process, 2) personal strategy for discussing HPV vaccine, 3) clinical practice guidelines preference, and 4) barriers to vaccine administration. Twenty-six comments were specific to males, with 17 physicians stating they did not recommend HPV vaccine to males. Physicians also cited the need for more information about HPV vaccine safety and efficacy for males. INTERPRETATION: Respondents used the open-ended portion of the survey to reemphasize issues that were most important to them and to offer insight about the vaccine and survey process. FUNDING: This study was funded by a grant from the National Institutes of Health (R01AI076440-01).

Reproductive health among cancer survivors is an important quality of life issue. Certain cancer therapies have known fertility risks. There is an existing cohort of adolescents and young adults (AYA) cancer survivors that, seen less frequently in clinical care settings than active patients, are likely not having discussions of fertility and other reproductive health issues. A survivor or healthcare provider can easily assume that the window of opportunity for fertility preservation has passed, however emerging research has shown this may not be the case. Recent data demonstrates a close relationship between fertility and other late effects to conclude that ongoing assessment during survivorship is warranted. Some fertility preservation procedures have also been shown to mitigate common late effects. This review explores the link between late effects from treatment and common comorbidities from infertility, which may exacerbate these late effects. This review also highlights the relevance of fertility discussions in the AYA survivorship population.