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Residency training is a pivotal time to establish skills for career-long practices, particularly for challenging skills such as human papillomavirus (HPV) vaccine recommendation. Training experience and preferences related to delivering HPV vaccine recommendations were examined for family medicine (FM) residents and faculty.Residents (n=28) and faculty (n=19) were identified through a national FM residency directory and recruited from training programs in Florida. Participants completed a phone interview assessing key aspects of HPV vaccine recommendation training. Interviews were audio recorded, transcribed verbatim, and analyzed using content analysis. A brief follow-up survey assessing training, practices, and demographics was emailed after the interview.Residents' training experience with HPV vaccine recommendation varied from none to extensive, and was often self-directed. Variation in training was seen between and within programs. Faculty often noted HPV vaccination training was not standardized and residents lacked instruction about effective communication. Most programs relied on preceptors for training residents but training from preceptors varied widely and was often not standardized within the program.This study identified a lack of consistent and standardized training for delivering HPV vaccine recommendations. A training curriculum that uses multiple modalities and reflects resident and faculty preferences is needed.

Background: Despite growing social acceptance, the LGBTQ population continues to face barriers to healthcare including fear of stigmatization by healthcare providers, and providers’ lack of knowledge about LGBTQ-specific health issues. This analysis focuses on the assessment of quantitative and qualitative responses from a subset of providers who identified as specialists that treat one or more of the seven cancers that may be disproportionate in LGBTQ patients. Methods: A 32-item web-based survey was emailed to 388 oncology providers at a single institution. The survey assessed: demographics, knowledge, attitudes, and practice behaviors. Results: Oncology providers specializing in seven cancer types had poor knowledge of LGBTQ-specific health needs, with fewer than half of the surveyed providers (49.5%) correctly answering knowledge questions. Most providers had overall positive attitudes toward LGBTQ patients, with 91.7% agreeing they would be comfortable treating this population, and would support education and/or training on LGBTQ-related cancer health issues. Conclusion: Results suggest that despite generally positive attitudes toward the LGBTQ population, oncology providers who treat cancer types most prevalent among the population, lack knowledge of their unique health issues. Knowledge and practice behaviors may improve with enhanced education and training on this population’s specific needs.

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.

Background Little is known about the rate at which cancer survivors successfully adopt a child or about their experiences negotiating a costly, and perhaps discriminatory, process regarding the prospective parent's health history. The current study describes the results of a learning activity where nurses contacted an adoption agency to learn more about the process for survivors with the goal of helping nurses provide patients with accurate information for making a well-informed decision regarding adoption.

Visions for the future are a normal developmental process for adolescents and young adults (AYAs) with and without cancer, and these visions often include expectations of sexual and romantic relationships. AYA cancer survivors indicate reproductive health is an issue of great importance and more attention is needed in the health care setting throughout the cancer experience, beginning at diagnosis. Various practice guidelines are predominately focused on fertility; are intended to influence survivorship care plans; and do not encompass the broad scope of reproductive health that includes romantic partnering, friendships, body image, sexuality, sexual identity, fertility, contraception, and more. Although interventions to reduce reproductive health-related sequelae from treatment are best approached as an evolving process, practitioners are not certain of the priorities of these various reproductive health content areas. Strategies incongruent with the reproductive health priorities of AYAs will likely thwart adequate follow-up care and foster feelings of isolation from the treatment team. Research is needed to identify these priorities and ensure discussions of diverse content areas. This review explored various domains of reproductive health and emphasized how understanding the priorities of the AYA cancer cohort will guide future models of care.

The adolescent and young adult (AYA) population is underserved because of unique late-effect issues, particularly future fertility. This study sought to establish rates of documentation of discussion of risk of infertility, fertility preservation (FP) options, and referrals to fertility specialists in AYA patients' medical records at four cancer centers.All centers reviewed randomized records within the top four AYA disease sites (breast, leukemia/lymphoma, sarcoma, and testicular). Eligible records included those of patients: diagnosed in 2011, with no prior receipt of gonadotoxic therapy; age 18 to 45 years; with no multiple primary cancers; and for whom record was not second opinion. Quality Oncology Practice Initiative methods were used to evaluate documentation of discussion of risk of infertility, discussion of FP options, and referral to a fertility specialist.Of 231 records, 26% documented infertility risk discussion, 24% documented FP option discussion, and 13% documented referral to a fertility specialist. Records were less likely to contain evidence of infertility risk and FP option discussions for female patients (P = .030 and .004, respectively) and those with breast cancer (P = .021 and.001, respectively). Records for Hispanic/Latino patients were less likely to contain evidence of infertility risk discussion (P = .037). Records were less likely to document infertility risk discussion, FP option discussion, and fertility specialist referral for patients age ≥ 40 years (P.001,.001, and .002, respectively) and those who already had children (all P.001).The overall rate of documentation of discussion of FP is low, and results show disparities among specific groups. Although greater numbers of discussions may be occurring, there is a need to create interventions to improve documentation.

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.

The Lesbian, Gay, Bisexual, Transgender/Transsexual, Queer/Questioning, Intersex (LGBTQI) population experiences cancer health disparities due to lack of disclosure and knowledge about increased cancer risk. Oncology health care providers and institutions should create environments that encourage disclosure of sexual orientation and identity.

Background: African Americans (AAs) are less likely to participate in cancer clinical trials (CCTs) despite experiencing disproportionately higher rates of cancer mortality. As a way to address these ongoing disparities, this study sought to qualitatively explore informational needs regarding CCTs among AA women and identify message considerations for educational information targeting AA women and their community. Methods: Three focus groups were conducted in which AA women viewed a DVD created as a decisional tool for CCT participation and provided feedback regarding content. Results: Results indicated general fear regarding CCTs, which is partially attributable to the impact of historic research abuses, lack of information regarding CCTs, and lack of cultural relevance of the education and outreach materials for AA communities. Recruitment of AAs to CCTs may be enhanced by educational and outreach approaches that increase awareness of CCTs as well as involvement of the AA community in developing such interventions. Conclusion: Interventions should include the perspectives of AA women, as key stakeholders and decision-makers for their family and provide research information in a multimedia format that will facilitate family discussion and decision-making regarding CCTs.

The Advisory Committee on Immunization Practices recommends that men who have sex with men (MSM) 26 years of age or younger be routinely vaccinated against HPV. For men outside of this risk-based population, the recommendation is routine vaccination until age 21. Thus, in order for this risk-based recommendation for MSM to be implemented, two distinct actions need to be completed during the clinical visit: (1) discuss recommendations for HPV vaccination with men and (2) assess sexual orientation to determine if a risk-based recommendation should be made. We assessed the degree to which physicians routinely discussed issues of sexual orientation and HPV vaccination with male patients 22-26 years old. We used data from a statewide representative sample of 770 primary care physicians practicing in Florida who were randomly selected from the American Medical Association Physician Masterfile. The analytic sample consisted of physicians who provided care to men 22-26 years old (N = 220). Response rate was 51%. Data collection took place in 2014 and analyses in 2016. Only 13.6% of physicians were routinely discussing both sexual orientation and HPV vaccination with male patients 22-26 years old, and approximately a quarter (24.5%) were not discussing either. Differences in these behaviors were found based on gender, Hispanic ethnicity, availability of HPV vaccine in clinic, HPV-related knowledge, and specialty. A minority of physicians in this sample reported engaging with these patients in ways that are mostly likely to result in recommendations consistent with current Advisory Committee on Immunization Practices guidelines.

Transgender youth are at high risk for mental health morbidities. Based on treatment guidelines, puberty blockers and gender-affirming hormone therapy should be considered to alleviate distress due to discordance between an individual's assigned sex and gender identity. The goals of this study were to examine the: (1) prevalence of mental health diagnoses, self-injurious behaviors, and school victimization and (2) rates of insurance coverage for hormone therapy, among a cohort of transgender adolescents at a large pediatric gender program, to understand access to recommended therapy.An IRB-approved retrospective medical record review (2014-2016) was conducted of patients with ICD 9/10 codes for gender dysphoria referred to pediatric endocrinology within a large multidisciplinary gender program. Researchers extracted the following details: demographics, age, assigned sex, identified gender, insurance provider/coverage, mental health diagnoses, self-injurious behavior, and school victimization.Seventy-nine records (51 transgender males, 28 transgender females) met inclusion criteria (median age: 15 years, range: 9-18). Seventy-three subjects (92.4%) were diagnosed with one or more of the following conditions: depression, anxiety, post-traumatic stress disorder, eating disorders, autism spectrum disorder, and bipolar disorder. Fifty-nine (74.7%) reported suicidal ideation, 44 (55.7%) exhibited self-harm, and 24 (30.4%) had one or more suicide attempts. Forty-six (58.2%) subjects reported school victimization. Of the 27 patients prescribed gonadotropin-releasing hormone analogues, only 8 (29.6%) received insurance coverage.Transgender youth face significant barriers in accessing appropriate hormone therapy. Given the high rates of mental health concerns, self-injurious behavior, and school victimization among this vulnerable population, healthcare professionals must work alongside policy makers toward insurance coverage reform.

Counselling about fertility and options for fertility preservation is imperative for young people undergoing potentially gonadotoxic treatments. Anderson and Davies highlight recent success using cryopreserved ovarian tissue.1 This experimental approach, coupled with established techniques such as embryo and oocyte freezing in females and semen cryopreservation for adult men, offers a realistic possibility for future fertility.2 However, no established options …

The objectives of this study were to identify cancer-related health care services and to explore the presence of inter-organizational interactions among clinical and support oncology services in southern Puerto Rico.From January through July of 2010, a survey was completed by 54 health care organizations offering clinical, supportive, or both services to cancer patients/survivors (CPS) in southern PR. Survey data were compiled and descriptive analyses performed using the software Statistical Package for a Social Science (SPSS), version 18.0.The distribution of the primary services provided by the participating organizations was the following: 26 had clinical services, 16 had support services, and 12 offered a combination of clinical and support services. Only 24 % of the surveyed organizations offered their services exclusively to patients diagnosed with cancer. In terms of referral practices, 61 % of the responses were for medical specialists, 43 % were for mental health services, and 37 % were referrals for primary care services. The most common reason for interacting (n = 27) was to provide a given patient both a referral and information.Findings suggest gaps in both the availability of oncology services and the delivery of integrated health care. Lack of communication among clinical and support organizations (for cancer patients, specifically) could negatively impact the quality of the services that they offer. Further network analysis studies are needed to confirm these gaps. Until systemic, structural changes occur, more efforts are needed to facilitate communication and collaboration among these kinds of organization.

This study explored federally qualified health center (FQHC) patients' perceptions about colorectal cancer screening (CRCS) tests, including immunochemical fecal occult blood tests (iFOBT), as well as preferences for receiving in-clinic education about CRCS. Eight mixed gender focus groups were conducted with 53 patients. Findings centered on three thematic factors: (1) motivators and impediments to CRCS, (2) test-specific preferences and receptivity to iFOBTs, and (3) preferences for entertaining and engaging plain language materials. Results informed the development of educational priming materials to increase CRCS using iFOBT in FQHCs.

Few studies have reported on African American and Hispanic (AA and H) populations' informational needs when seeking cancer care at an institution that offers clinical trials. Moffitt Cancer Center (MCC) sought to identify and examine the decision making process, the perceptions, and the preferred channels of communication about cancer care services for AA and H communities in order to develop a list of marketing recommendations. Five focus groups (N = 45) consisting of two AA and three H were conducted in four counties of the MCC catchment area in Tampa, FL. Participants were asked about their perceptions, knowledge, attitudes, and beliefs about cancer care and MCC. Focus groups were audio-recorded and verbatim transcripts were analyzed using content analysis. Similarities in responses were found between AA and H participants. Participants received general health and cancer information from media sources and word of mouth and preferred to hear patient testimonials. There were concerns about costs, insurance coverage, and the actual geographic location of the cancer center. In general, H participants were not opposed to participating in cancer clinical trials/research, whereas, AA participants were more hesitant. A majority of participants highly favored an institution that offered standard care and clinical trials. AA and H participants shared similar concerns and preferences in communication channels, but each group had specific informational needs. The perceptions and preferences of AA and H must be explored in order to successfully and efficiently increase cancer clinical trial participation.

While ethical concerns about participating in biospecimen research have been previously identified, few studies have reported the concerns among individuals with familial risk for hereditary cancer (IFRs). At the same time, biomedical researchers often lack training in discussing such concerns to potential donors. This study explores IFRs' and biomedical researchers' perceptions of ethical concerns about participating in biobanking research. In separate focus groups, IFRs and biomedical researchers participated in 90-min telephone focus groups. Focus group questions centered on knowledge about laws that protect the confidentiality of biospecimen donors, understanding of informed consent and study procedures, and preferences for being recontacted about potential incidental discovery and also study results. A total of 40 IFRs and 32 biomedical researchers participated in the focus groups. Results demonstrated discrepancies between the perceptions of IFRs and researchers. IFRs' concerns centered on health information protection; potential discrimination by insurers and employers; and preferences for being recontacted upon discovery of gene mutations or to communicate study results. Researchers perceived that participants understood laws protecting donors' privacy and (detailed study information outlined in the informed consent process), study outcomes were used to create a training tool kit to increase researchers' understanding of IFRs' concerns about biobanking.

Background: No validated multiscale instruments exist that measure community members' views on biobanking and biospecimen donation. This study describes the development and psychometric properties of the English-language BANKS (Biobanking Attitudes and Knowledge Survey). Methods: The BANKS was created by item generation through review of scientific literature, focus groups with community members, and input from a community advisory board. Items were refined through cognitive interviews. Content validity was assessed through an expert panel review. Psychometric properties of the BANKS were assessed in a sample of 85 community members. Results: The final BANKS includes three scales: attitudes, knowledge, and self-efficacy; as well as three single items, which evaluated receptivity and intention to donate a biospecimen for research. Cronbach α coefficients for two scales that use Likert response format indicated high internal consistency (attitudes: α, 0.88; self-efficacy: α, 0.95). Content validity indices were moderate, ranging from 0.69 to 0.89. Intention to donate blood and intention to donate urine were positively correlated with attitudes, knowledge, self-efficacy, and receptivity to learning more about biobanking (P values range from 0.029 to Conclusions: The final BANKS shows evidence of satisfactory reliability and validity, is easy to administer, and is a promising tool to inform biospecimen research. Additional studies should be conducted with larger samples considering biospecimen donation to further assess the reliability and validity of the instrument. Impact: A valid and reliable instrument measuring community members' views about biobanking may help researchers evaluate relevant communication interventions to enhance understanding, intention, and actual biospecimen donation. A Spanish-language BANKS is under development. See all articles in this CEBP Focus section, “Community Network Program Centers.” Cancer Epidemiol Biomarkers Prev; 23(3); 374–82. ©2014 AACR.

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 echnologies often required for women with advanced maternal age to better inform their career, family, and lifestyle decisions.

In Puerto Rico (PR), cancer is the leading cause of death. Previous research has identified the need for cancer education in PR. Using culturally adapted cancer curricula to train local health educators may effectively increase cancer education and reduce health disparities. This article describes the three-phase process used to transcreate the Cancer 101 curriculum to train Master of Public Health (MPH) students to educate PR communities. First, an expert panel collaboratively reviewed the curriculum for content, legibility, utility, and colloquialisms. Recommendations included incorporating local references and resources, replacing words and examples with culturally relevant topics, and updating objectives and evaluation items. Subsequent focus groups with 10 MPH students assessed the adaptation's strengths, weaknesses, and utility for future trainees. Participants were satisfied with the curriculum's overall adaptation, ease of use, and listed resources; further improvements were suggested for all modules. Final expert panel revisions highlighted minor feedback, with the final curriculum containing nine transcreated modules. The transcreation process identified the need for changes to content and cultural translation. Changes were culturally and literacy-level appropriate, represented PR's social context, and were tailored for future trainees to successfully deliver cancer education. Findings highlight the importance of adapting Spanish educational materials across Hispanic sub-groups.

Although they are critical to models of coordinated care, the relationship and communication between primary care providers (PCPs) and cancer specialists throughout the cancer continuum are poorly understood. By using predefined search terms, the authors conducted a systematic review of the literature in 3 databases to examine the relationship and communication between PCPs and cancer specialists. Among 301 articles identified, 35 met all inclusion criteria and were reviewed in-depth. Findings from qualitative, quantitative, and disaggregated mixed-methods studies were integrated using meta-synthesis. Six themes were identified and incorporated into a preliminary conceptual model of the PCP-cancer specialist relationship: 1) poor and delayed communication between PCPs and cancer specialists, 2) cancer specialists' endorsement of a specialist-based model of care, 3) PCPs' belief that they play an important role in the cancer continuum, 4) PCPs' willingness to participate in the cancer continuum, 5) cancer specialists' and PCPs' uncertainty regarding the PCP's oncology knowledge/experience, and 6) discrepancies between PCPs and cancer specialists regarding roles. These data indicate a pervasive need for improved communication, delineation, and coordination of responsibilities between PCPs and cancer specialists. Future interventions aimed at these deficiencies may improve patient and physician satisfaction and cancer care coordination. CA Cancer J Clin 2017;67:156-169. © 2016 American Cancer Society.

The authors of “Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine” (Kraft et al. 2018) do an excellent job of highlighting the need to understand factor...

IntroductionYoung patients with breast cancer may face impaired fertility due to cancer treatments, which often leads to complex fertility decisions. To aid fertility decision-making, it is crucial that women have access to high-quality information; however, their fertility information needs are often unmet. Decision aids (DAs) are educational materials to assist with decision-making, by addressing individual values and preferences. In oncofertility, DAs may constitute a valuable resource to help patients obtain information and make better informed decisions. This paper reports on the protocol of the development and transcreation of a fertility-related DA booklet to support young Portuguese patients with breast cancer, originally developed and validated for an Australian audience.Methods and analysisRecent literature on clinical guidelines will be reviewed. A summary of these guidelines will be created and will inform the first round of DAs revisions. A forward translation process will translate the DA from Australian English to Portuguese. A multidisciplinary Portuguese experts panel will revise and give feedback on the scientific and cultural aspects of the DA content for Portuguese audience. Next, a backward translation process will assess content equivalence between the original and the final adapted version. Finally, Learner Verification (LV) will be used in a qualitative study of young patients with breast cancer and their partners. Two focus groups with 6–10 participants each will be conducted with: (1) recently diagnosed young patients with breast cancer; (2) breast cancer survivors and (3) their partners. Results from the DA acceptability assessment will inform its final version. Data will be analysed using content analysis and constant comparison method to identify key themes/textual units related to LV.Ethics and disseminationEthical approval was granted by the Portuguese Institute of Oncology Porto. Results will be disseminated through peer-reviewed journals and presented at scientific meetings for academic and health professionals audiences.

10050 Background: Preserved fertility after cancer is a priority for male survivors and their families. Sperm banking (SB) before initiation of treatment is standard of care for post-pubertal males. Experimental testicular tissue cryopreservation (TTC) is the only current option for pre-pubertal boys. ASCO recommends TTC be carried out under an experimental protocol. We surveyed COG sites about their FP infrastructure and practices. Methods: A REDcap survey was emailed to one individual previously identified as knowledgeable about FP or the Principal Investigator at each COG site. Site specific factors associated with outcomes were determined using logistic regression. All study procedures were IRB-approved. Results: Responses were received from 144 of 220 institutions (65%). Discussions about fertility were reported as routinely held with all post-pubertal males, all males “at risk” of infertility, and all males at 108 (75%), 100 (69%), and 55 (38%) institutions, respectively. SB was available at 135 (94%) sites; 105 (73%) offer SB inpatient and outpatient, 88 (64%) offer SB to all post-pubertal males, and 39 (28%) offer SB after chemotherapy has started. TTC was accessible at 37 (27%) sites and was independently associated with large (>120 new patients/year) size (odds ratio [OR] 3.3 95% confidence interval [CI] 1.2-9.3), and the presence of a FP navigator/team [OR 3.3 CI 1.4-7.8). Seventeen sites (12%) offered TTC by referring elsewhere, 14 (10%) under an IRB protocol and 6 (4%) as a clinical service. Conclusions: SB is widely available across participating COG sites, however only 2/3 of sites offer banking to all post-pubertal males. The availability of TTC at treating institutions is quite limited. This access may be modifiable given the association of an established FP navigator/team with the ability to offer and/or refer patients to outside institutions for TTC. There are practices, such as SB after the start of treatment and offering TTC as a clinical service, that do not align with guideline recommendations. These survey results suggest FP services remain inadequate in this patient population and highlight opportunities for research leading to interventions.

11567 Background: Preserved fertility after cancer is a priority for female survivors and their families. Embryo/oocyte cryopreservation are standard of care (SOC) for post-pubertal females. Experimental ovarian tissue cryopreservation (OTC) is the only current option for pre-pubertal girls. We surveyed COG sites about their FP infrastructure and practices. Methods: A REDcap survey was emailed to one individual previously identified as knowledgeable about FP or the Principal Investigator at each COG site. Site specific factors associated with outcomes were determined using logistic regression. All study procedures were IRB-approved. Results: Responses were received from 144 of 220 sites (65%). Discussions about fertility at diagnosis were reported as routinely held with all females “at risk” of infertility, all post pubertal females, and all females at 113 (78%), 94 (65%), and 65 (45%) of sites respectively. Embryo/oocyte cryopreservation was offered at 95 (70%) institutions and independently associated with large (>120 new patients/year) sites (OR 6.0 95%CI 1.6-22.8) and presence of a FP navigator/team (OR 4.7 95%CI 1.7-13.5). OTC was offered at 64 (48%) sites: 34 (25%) by referral to another institution, 18 (13%) under an IRB protocol, and 12 (9%) as a clinical service. OTC accessibility was associated with large sites (OR 3.2 95% CI 1.1-8.9) and a FP navigator/team (OR 3.2 95%CI 1.4-7.0). A total of 102/133 (77%) sites use gonadotropin releasing hormone analogues (GnRHa) for any indication; 90 (68%) for menstrual suppression, 75 (56%) with the goal of ovarian suppression for fertility preservation, and 27 (20%) for contraception. Conclusions: Variation in FP services exists across COG. Discussion of infertility risk is not universal. The availability of OTC at treating institutions is limited. The presence of an FP navigator/team is a modifiable factor associated with greater likelihood of accessing SOC and experimental options. Despite conflicting evidence and lack of endorsement from professional societies, GnRHa’s are commonly used for FP. These survey results suggest FP services remain inadequate but highlight opportunities for improvement and areas of needed research.

Background: “Expectancies,” or beliefs about outcomes, robustly correlate with and predict several behaviors including electronic nicotine delivery system (“e-cigarette”) use. However, there is limited qualitative research available regarding relevant e-cigarette vaping expectancies. Objectives: The present study used a qualitative approach to derive and refine e-cigarette expectancy themes among young adults. Methods: We conducted 12 focus groups and two individual interviews with young adult nonusers, e-cigarette vapers, cigarette smokers, and dual users to assess beliefs about the effects of e-cigarettes. After a series of open-ended questions, follow-up questions assessed reactions to domains previously examined in expectancy measures for cigarette smoking and e-cigarette vaping. The constant comparative method was used to derive themes from transcripts. Results: Four main themes ( Positive Reinforcement, Social Benefits, Negative Affect Reduction, Negative Consequences) emerged from the results. Each theme contained three associated subthemes ( Positive Reinforcement: Sensorimotor Experiences, Taste, Stimulation; Social Benefits: Social Facilitation, Influence on Others, Convenience; Negative Affect Reduction: Stress Reduction, Appetite Reduction, Boredom Reduction; and Negative Consequences: Health Risks, Addiction, Secondhand Effects). Conclusions/importance: Previously identified smoking expectancies appear relevant for young adult vaping, with some notable refinements. Positive reinforcement aspects encompassed aerosol clouds, vaping tricks, and unique flavors. Social benefits included influencing others via social media and competitive activity, as well as the convenience of use in a variety of places. Negative affect reduction was controversial among user groups, but vaping was seen as more interesting than smoking and thus more effective at boredom reduction. Young adults were uncertain regarding negative consequences, but appreciated a potential for secondhand effects. Measure refinement via qualitative research and future field testing can enhance our understanding of this relatively new behavior, supporting tobacco control surveillance, marketing/labeling regulations, and counter-advertising development/evaluation.

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.

Although screening reduces colorectal cancer (CRC) incidence and mortality, screening rates are low, particularly among CRC patients' first-degree relatives (FDRs). Little is known about discussion of family members' risk of CRC among patients and their health care providers or with their FDRs. The purpose of this research, guided by the Protection Motivation Theory, was to assess patients' patterns of disclosure of CRC diagnosis to adult siblings and/or children and discussion of familial risk by healthcare providers. A cross-sectional sample of patients who received care at a comprehensive cancer center was recruited to complete telephone-based interviews related to disclosure of CRC diagnosis to FDRs, recall of physician counseling about familial risk, and patients' perception of CRC risk to FDRs. Sixty-nine patients completed the interview. Most participants (n = 67, 97%) had informed their adult children or siblings of their CRC diagnosis to keep their family informed of their health status (n = 15, 22%) and to encourage FDRs to screen for CRC (n = 14, 20%). More than half of the participants' physicians (n = 38, 55%) discussed FDRs' risk of developing CRC with the patient. However, a substantial proportion of patients reported no physician discussion of this risk (n = 28, 41%). Data from this study may guide the development of interventions to facilitate physician discussion and counseling of CRC patients about their FDRs' risk for CRC. However, future studies should explore whether FDRs are likely to be screened after becoming aware of their family member's diagnosis of CRC.

Introduction Reduction of smoking during pregnancy and in the postpartum period remains a public health priority. This study tested whether variables (demographic, pregnancy related, emotional, and smoking related) assessed in abstinent women during their pregnancy predicted resumed smoking at 1 month and 1 year postpartum. Additionally, pregnancy-related and smoking-related variables obtained in the immediate postpartum period were examined as predictors of smoking at 1 year postpartum. Methods Participants were pregnant women in their second and third trimester (N = 504) who enrolled in a randomized controlled trial of a smoking relapse-prevention intervention. Multivariate regression analyses were conducted with baseline data collected during pregnancy and follow-up assessments completed at 1 month and 12 months postpartum. Results Independent predictors of smoking at 1 month postpartum included not intending to remain abstinent, lower quitting confidence, the presence of other household smokers, and not planning to breast feed. Smoking at 12 months postpartum was predicted by only not intending to remain abstinent and having a partner who maintained his or her smoking rate. In contrast, when assessed at 1 month postpartum, smoking at 12 months was predicted by current smoking status and lower quitting confidence. Conclusions Baseline variables measured during pregnancy differentially predicted early versus late smoking status. After delivery, the best predictor of later smoking status was current smoking status, reinforcing the need to focus on preventing early postpartum relapse. The importance of quitting confidence, or self-efficacy, was also reinforced. Findings may be useful for screening women at risk of relapse and targeting interventions to key variables.

Quality of life (QOL) is increasingly recognized as an important clinical outcome of hematopoietic cell transplantation (HCT), but patient education is often overlooked. The aim of the current qualitative study was to examine education regarding post-HCT QOL from the patient's perspective. Allogeneic HCT recipients participated in one of four focus groups. Participants were asked to recall what they had been told about post-HCT QOL as they were preparing for transplant, how their QOL differed from what they expected and how to educate future patients about post-HCT QOL. Verbatim transcripts were coded for both a priori and emergent themes using content analysis. A total of 24 patients participated (54% female, mean age 51, range 23-73 years). Participants frequently expressed the desire for additional education regarding post-HCT QOL, particularly late complications. They noted that late complications were often unexpected, had a profound impact on their QOL and threatened their ongoing sense of recovery. They emphasized that the timing, content and format of education regarding QOL should be flexible to meet their diverse needs. Findings from the current study draw attention to the importance of patient education regarding post-HCT QOL as well as additional QOL research designed with patient education in mind.

Clinical trials hold great promise for cancer treatment; yet, Hispanic cancer patients have low rates of clinical trial participation. Lack of awareness and knowledge of clinical trials and language barriers may account for low participation rates. Patient education through audiovisual materials can improve knowledge of and attitudes toward clinical trials among Hispanic populations. In this study, 36 Hispanic cancer patients/survivors and caregivers in Florida and Puerto Rico participated in focus groups to aid in developing a Spanish-language DVD and booklet intervention designed to increase knowledge about clinical trials. Focus group results showed (a) low levels of knowledge about clinical trials, (b) uncertainty about why a physician would expect a patient to make a choice about treatment, and (c) desire for family participation in decision making. Respondents expressed various preferences for aspects of the DVD such as showing extended family in the DVD and physician explanations about key terms. On the basis of these preferences, the authors developed a creative brief for a DVD. The content of the DVD was reviewed by Hispanic community leaders and key stakeholders. A final DVD was created, in Spanish, using Hispanic patients and physicians, which contained the information deemed important from the focus groups and stakeholder interviews. The DVD is complete with companion booklet and currently undergoing a randomized control trial.

BACKGROUND Young breast cancer survivors often need to deal with adverse effects of treatments on fertility and complex reproductive decisions. In this systematic review, we highlight what is known about childbearing and parenthood attitudes and decisions of young breast cancer survivors from their own perspective. METHODS We conducted manual and electronic searches on Pubmed, PsychInf and CINAHL databases for articles, published in English between 1 January 1990 and 31 October 2012, that assessed childbearing, pregnancy and parenthood attitudes/decisions of female breast cancer survivors (premenopausal and/or

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.

It is well established that the general public has varying interpretations of the term "risk" and the qualifiers associated with it, such as low, moderate, or high. What is less well known is how definition and application of this term impacts recruitment of individuals, particularly for biomedical and behavioral research designed to improve knowledge of and access to innovations in cancer genetics. This Commentary discusses the nomenclature used in bio-behavioral research and the potential for confusion due to divergent meanings of risk and its associated categorizations. We discuss both our experience with recruitment of familial cancer families for a study on perceptions of biobanking as well as lessons learned from published examples where divergent understanding of risk levels, genetic research processes, and interpretation of results between community members and researchers result in misunderstandings for both parties. Ultimately, a critical challenge remains to ensure that accurate and mutually relevant risk terms are used in recruiting research participants and providing genetic results. Achieving this goal requires that regulations, policy, education, and practice change in step with rapid discoveries in genetic research to reduce misinterpretations resulting from lack of common understanding and specificity in risk terminology.

Objective This systematic review was conducted to synthesize the existing evidence regarding key considerations influencing African Americans' participation in cancer clinical trials (CCTs). Methods The PubMed and PsycINFO databases were searched to identify peer-reviewed publications during the last decade (2002–2011) that met our inclusionary criteria. Our search utilized Boolean combinations of the following terms: “clinical trial”; “cancer”; “neoplasm”; “African American”; “Black”; “caregiver”; “decision making”; “recruitment”; “companion”; “family”; “significant other”; and “social support”. Results A total of 267 articles were identified in the database searches. Of these articles, a total of 31 were determined to meet the inclusion criteria and were retained for review. Key issues that emerged as impediments to a successful recruitment of African Americans to CCTs included negative attitudes towards clinical trials, low levels of knowledge and awareness regarding CCTs, religious beliefs, and structural barriers, such as transportation, childcare, and access to health care. Recommendations from physicians, family members, and friends may promote CCT participation. Multimedia, and culturally-appropriate recruitment approaches may also be effective in soliciting participation among African Americans. Conclusion Existing research underscores the importance of social support from family and friends, cultural appropriateness and sensitivity from physicians and in the design of the CCT, and enhanced education among African Americans in decision-making processes. As African Americans are underrepresented in CCTs, targeted strategies to enhance recruitment efforts and improve cancer treatment outcomes are essential.

Clinical trials provide the most promising way to improve treatment outcomes in cancer. This study examined the rate at which eligible patients with lung cancer, at a National Cancer Institute-designated cancer center in the South, were offered a clinical trial and explored for reasons for ineligibility. We retrospectively reviewed 300 randomly selected lung cancer patients’ medical records seen in 2010, to assess clinical trial offers to eligible patients, reasons for not offering an eligible patient a trial, demographic factors associated with eligibility, and reasons for refusal among those offered a trial. Of the 300 patient charts, seven were excluded for lack of confirmed lung cancer diagnosis. Forty-six of the remaining 293 (15.7 %) patients were eligible for a clinical trial. Forty-five of the 46 (97.8 %) were considered for a trial by their oncologist. Thirty-five of the 45 (77.8 %) were offered a trial: 15 agreed (42.9 % of those offered, 5.1 % of patients reviewed), 11 declined, and 9 were undecided at the end of the review window. Patients with poor Eastern Cooperative Oncology Group (ECOG) performance status levels and small cell (SC) diagnoses were significantly less likely to be eligible for a trial. Results suggest that oncologists at the cancer center are effectively presenting all eligible patients with the option of a clinical trial; however, there is a need to increase the number of approved clinical trials for patients with SC or ECOG score greater than 2.

The purpose of this qualitative study was to assess the coping styles of female adolescent cancer patients regarding potential loss of fertility. Expectations and desires for the future, coping styles in typical adolescence, and coping styles when faced with potential loss of fertility due to cancer treatment are discussed.Female adolescents diagnosed with cancer aged 12-18 years at study (All adolescent participants reported having a strong desire for biological children in the future. Reactions to questions regarding the loss of fertility fell into two categories of coping styles: emotion-focused coping or problem-focused (engagement) coping. Within emotion-focused coping, there were three distinct styles: externalizing attribution style, internalizing attribution style, and repressive adaptation. Problem-focused coping adolescents displayed optimism.Successful interventions aimed at promoting adaptive coping styles should seek to uncover adolescents' values about future parenthood and reproduction. Development of an age-appropriate assessment to stimulate dialogue regarding fertility and initiate an adolescent's cognitive processing of potential fertility loss is warranted.

SUMMARY Quality of life is an important but distinct issue for adolescent and young adults (AYA) compared with older adults. Reproductive health is a key aspect of health-related quality of life and spans across physiological and psychological domains. While fertility issues have had more attention in the past 5 years, there are other aspects of reproductive health requiring recognition by healthcare practitioners in AYA oncology. These include attention to human papillomavirus and sexually transmitted infection risk, contraception and sexual health in relation to late effects of cancer and treatment. Alkylating agents in chemotherapy, total-body radiation or external-beam radiation in a field that includes the ovaries, testes or endocrine system may cause long-term impairment to reproductive health functioning. We examine reproductive health in relation to National Comprehensive Cancer Network and American Academy of Pediatrics guidelines for AYA cancer survivors in the USA. While fertility preservation ...

In preparation for the development of a rapid tissue donation (RTD) programme, we surveyed healthcare providers (HCPs) in our institution about knowledge and attitudes related to RTD with lung cancer patients. A 31-item web based survey was developed collecting data on demographics, knowledge and attitudes about RTD. The survey contained three items measuring participants' knowledge about RTD, five items assessing attitudes towards RTD recruitment and six items assessing HCPs' level of agreement with factors influencing decisions to discuss RTD. Response options were presented on a 5-point Likert scale. Ninety-one HCPs participated in the study. 66% indicated they had never heard of RTD prior to the survey, 78% rated knowledge of RTD as none or limited and 95.6% reported not having ethical or religious concerns about discussing RTD with patients. The majority were either not comfortable (17.8%) or not sure if they felt comfortable discussing RTD with cancer patients (42.2%). 56.1% indicated their knowledge of RTD would play an integral role in their decision to discuss RTD with patients. 71.4% reported concerns with RTD discussion and the emotional state of the patient. Physicians and nurses play an important role in initiating conversations about recruitment and donation to research that can ultimately influence uptake. Increasing HCP knowledge about RTD is a necessary step towards building an RTD programme. Our study provides important information about characteristics associated with low levels of knowledge and practice related to RTD where additional education and training may be warranted.

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).

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.