Faculty Bibliography

In this article we review the existing fertility preservation options for women diagnosed with Turner syndrome and provide practical guidelines for the practitioner. Turner syndrome is the most common sex chromosome abnormality in women, occurring in approximately 1 in 2500 live births. Women with Turner syndrome are at extremely high risk for primary ovarian insufficiency and infertility. Although approximately 70%-80% have no spontaneous pubertal development and 90% experience primary amenorrhea, the remainder might possess a small residual of ovarian follicles at birth or early childhood. The present challenge is to identify these women as early in life as is possible, to allow them to benefit from a variety of existing fertility preservation options. To maximize the benefits of fertility preservation, all women with Turner syndrome should be evaluated by an expert as soon as possible in childhood because the vast majority will have their ovarian reserve depleted before adulthood. Cryopreservation of mature oocytes and embryos is a proven fertility preservation approach, and cryopreservation of ovarian tissue is a promising technique with a growing number of live births, but remains investigational. Oocyte cryopreservation has been performed in children with Turner syndrome as young as 13 years of age and ovarian tissue cryopreservation in affected prepubertal children. However, current efficacy of these approaches is unknown in this cohort. For those who have already lost their ovarian reserve, oocyte or embryo donation and adoption are strategies that allow fulfillment of the desire for parenting. For those with Turner syndrome-related cardiac contraindications to pregnancy, use of gestational surrogacy allows the possibility of biological parenting using their own oocytes. Alternatively, gestational surrogacy can serve to carry pregnancy resulting from the use of donor oocytes or embryos, if needed.

PURPOSE: To evaluate the barriers and facilitators to taking anti-hormonal medications among medically and historically underserved breast cancer survivors within the first 5 years post chemotherapy, radiation, and/or surgery. METHODS: The current study was framed within the National Institutes of Health Centers for Population Health and Health Disparities Model (NIHCPHHD Model). Twenty-five historically or medically underserved breast cancer survivors participated in an in-depth interview, in either English or Spanish. Interviews were audio recorded and transcribed verbatim. Interview data were analyzed using content analysis. RESULTS: Anti-hormonal medication adherence was facilitated in several ways, including establishing a routine of medication taking, leaving the medicine in a visible or easily accessible place, taking the medication with other medications, reducing the cost of medicine, using a pillbox, understanding the negative consequences of lack of adherence, and having positive interactions with physicians. Side effects were the most commonly mentioned barrier to medication adherence. CONCLUSIONS: Similar to other research, this qualitative study of medically and historically underserved breast cancer survivors in the USA found that side effects are the most frequently endorsed barrier to anti-hormonal medication adherence. Conversely, there were a number of facilitators of correct and consistent anti-hormonal medication use. The management of side effects is critically important to increase adherence to anti-hormonal medications. Health care providers, support providers, and caregivers can encourage breast cancer survivors to better adhere to anti-hormonal medications using a number of approaches that have been successful for other women.

Few research studies with non-English-speaking audiences have been conducted to explore community members' views on biospecimen donation and banking, and no validated Spanish-language multi-scale instruments exist to measure community perspectives on biobanking. This study describes the development and psychometric properties of the Biobanking Attitudes aNd Knowledge Survey-Spanish (BANKS-SP). The BANKS was translated into Spanish using the Brislin method of translation. Draft BANKS-SP items were refined through cognitive interviews, and psychometric properties were assessed in a sample of 85 Spanish-speaking individuals recruited at various community events in a three county area in central west Florida, USA. The final BANKS-SP 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. The final Cronbach's alpha coefficients for the two scales that use a Likert response format indicated adequate internal consistency (attitudes, alpha = .79; self-efficacy, alpha = .91). Intention to donate blood and intention to donate urine were positively correlated with attitudes, self-efficacy, and receptivity to learning more about biobanking (all p's < .001). BANKS-SP-Knowledge was not statistically significantly correlated with other BANKS-SP scales or single items measuring intention to donate a biospecimen for research and receptivity for learning more about biospecimen research. The BANKS-SP attitudes and self-efficacy scales show evidence of satisfactory reliability and validity. Additional research should be conducted with larger samples to assess the BANKS-SP instrument's reliability and validity. A valid and reliable Spanish-language instrument measuring Spanish-speaking community members' views about biobanking may help researchers evaluate relevant communication interventions to enhance understanding, intention, and actual biospecimen donation among this population.

BACKGROUND: Cancer care for adolescents and young adults (AYAs) focuses on the care of patients aged 15 to 39 years. Historically, this group has favorable outcomes based on a preponderance of diagnoses such as thyroid cancers and Hodgkin lymphoma. Improvements in outcomes among the AYA population have lagged behind compared with younger and older populations. METHODS: We discuss and review recent progress in AYA patient care and highlight remaining disparities that exist, including financial disadvantages, need for fertility care, limited clinical trial availability, and other areas of evolving AYA-focused research. RESULTS: Survival rates have not improved for this age group as they have for children and older adults. Disparities are present in the AYA population and have contributed to this lack of progress. CONCLUSIONS: Recognizing disparities in the care of AYAs with cancer has led many medical specialty disciplines to improve the lives of these patients through advocacy, education, and resource development. Research addressing barriers to clinical trial enrollment in this population, quality-of-life issues, and the improvement of survivorship care is also under way.

This study developed and validated the Biomedical Research Trust Scale (BRTS), a 10-item measure of global trust in biomedical research, in English and Spanish (BRTS-SP). In total, 85 English- and 85 Spanish-speaking participants completed the BRTS or BRTS-SP, as well as measures of biobanking attitudes, self-efficacy, receptivity, and intentions to donate blood or urine. Results indicated the BRTS and BRTS-SP showed adequate internal consistency in both English and Spanish. In addition, greater levels of trust in biomedical research were significantly associated with greater self-efficacy, receptivity, attitudes, and intentions to donate blood and urine in English-speaking participants, and self-efficacy and intention to donate urine in Spanish-speaking participants. These results support the use of the BRTS and BRTS-SP among English- and Spanish-speaking community members.

OBJECTIVE: There are limited data on lesbian, gay, bisexual, and transgender (LGBT) healthcare experiences and interactions with the providers. This study assessed knowledge, attitudes, and practice behaviors of oncology providers regarding LGBT health. 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: 108 providers participated in the survey (28% response rate). <50% answered knowledge questions correctly. 94% stated they were comfortable treating this population. 26% actively inquired about a patient's sexual orientation when taking a history. 36% felt the need for mandatory education on LGBT cultural competency at the institution. Results from the open comments section identified multiple misconceptions. CONCLUSION: This study revealed knowledge gaps about LGBT health risks. Cultural competency training may aid oncology providers to understand the need to inquire about patients' gender identity and sexual orientation. PRACTICE IMPLICATIONS: Health care providers who incorporate the routine collection of gender identity and sexual orientation (SOGI) in their patient history taking may improve patient care by offering tailored education and referrals. While identifying as LGBT does not in itself increase risk for adverse health outcomes, this population tends to have increased risk behaviors.

INTRODUCTION: It is important to consider the degree to which studies are explanatory versus pragmatic to understand the implications of their findings for patients, healthcare professionals, and policymakers. Pragmatic trials test the effectiveness of interventions in real-world conditions; explanatory trials test for efficacy under ideal conditions. The Consortium of Hospitals Advancing Research on Tobacco (CHART) is a network of seven NIH-funded trials designed to identify effective programs that can be widely implemented in routine clinical practice. METHODS: A cross-sectional analysis of CHART trial study designs was conducted to place each study on the pragmatic-explanatory continuum. After reliability training, six raters independently scored each CHART study according to ten PRagmatic Explanatory Continuum Indicator Summary (PRECIS) dimensions, which covered participant eligibility criteria, intervention flexibility, practitioner expertise, follow-up procedures, participant compliance, practitioner adherence, and outcome analyses. Means and SDs were calculated for each dimension of each study, with lower scores representing more pragmatic elements. Results were plotted on "spoke and wheel" diagrams. The rating process and analyses were performed in October 2014 to September 2015. RESULTS: All seven CHART trials tended toward the pragmatic end of the spectrum, although there was a range from 0.76 (SD=0.23) to 1.85 (SD=0.58). Most studies included some explanatory design elements. CONCLUSIONS: CHART findings should be relatively applicable to clinical practice. Funders and reviewers could integrate PRECIS criteria into their guidelines to better facilitate pragmatic research. CHART study protocols, coupled with scores reported here, may help readers improve the design of their own pragmatic trials.

INTRODUCTION: Electronic cigarette (EC) use is growing dramatically with use highest among young adults and current smokers. One of the most common reasons for using ECs is interest in quitting or reducing cigarettes per day (CPD); however there are few randomized controlled trials (RCT) on the effect of ECs on smoking abstinence and reduction. METHODS: We conducted a two-arm; double-blind RCT. Subjects were randomized to receive 3-weeks of either disposable 4.5% nicotine EC (intervention) or placebo EC. The primary outcome was self-reported reduction of >/=50% in the number of CPDs smoked at week 3 (end of treatment) compared to baseline. Study subjects (n=99) were young adult (21-35), current smokers (smoked >/=10 CPDs) living in NYC. RESULTS: Compared with baseline, a significant reduction in CPDs was observed at both study time periods (1 and 3 weeks) for intervention (p<.001) and placebo (p<.001) groups. Between-group analyses showed significantly fewer CPDs in the intervention group compared to the placebo group at week 3 (p=.03), but not at any other follow-up periods. The logistic regression analysis showed that using a greater number of ECs, treatment condition and higher baseline readiness to quit were significantly associated with achieving >/=50% reduction in CPDs at the end of treatment. CONCLUSION: A diverse young adult sample of current everyday smokers, who were not ready to quit, was able to reduce smoking with the help of ECs. Further study is needed to establish the role of both placebo and nicotine containing ECs in increasing both reduction and subsequent cessation.