Faculty Bibliography

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.

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.

OBJECTIVE: To assess fertility counseling and preservation practices among children, adolescents, and young adults with rheumatic diseases undergoing cyclophosphamide (CTX) treatment. DESIGN: Retrospective chart review (2006-2016). SETTING: Academic pediatric center. PATIENT(S): Male and female patients with systemic lupus erythematosus, Wegener's granulomatosis/granulomatosis with polyangiitis, or other vaculitides, receiving CTX treatment. INTERVENTION(S): None. MAIN OUTCOME MEASURE(S): Documentation of fertility counseling and fertility preservation. RESULT(S): A total of 58 subjects met the inclusion criteria; 5 were excluded due to incomplete records, thus N = 53. Of these 75% were female (N = 40). Median age was 14 years at diagnosis and 15 years at first CTX treatment. A total of 51% of subjects (69% of males and 45% of females) had no documentation about potential fertility loss before CTX treatment. Among females where fertility counseling was documented, the only fertility preservation option discussed was leuprolide acetate (LA), which was pursued in all of these cases. Of 13 males (77% postpubertal), 3 were offered sperm banking, of whom 2 declined and the other attempted after treatment began and was azoospermic. Of 53 patients, 1 was referred to a fertility specialist. Mean cumulative CTX dose was 9.2 g in males and 8 g in females. CONCLUSION(S): Based on these findings, increasing awareness about infertility risk, fertility preservation options, and referral to fertility specialists is needed among pediatric rheumatologists. Prospective studies are needed to assess fertility outcomes in this patient population (including effectiveness of LA with regard to pregnancy rates [PRs]), as well as barriers/facilitators to fertility counseling and fertility preservation.

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.

It is well documented that cancer treatment may temporarily or permanently impair childbearing potential of young women with breast cancer. Given that many patients have not initiated or completed their families when diagnosed, fertility issues are of utmost importance in this clinical population. This review addresses the importance of incorporating fertility issues into the clinical care of young breast cancer patients, focusing on recent knowledge and counselling practices about fertility-related issues and the complexity of fertility-related decisions in this population. Multiple studies report cancer-related infertility may have serious psychological consequences and reduce Quality of Life for some patients. To guide health care providers and patients regarding appropriate, safe, and cost-effective fertility care for women who desire biological children, several professional organizations have developed clinical practice guidelines. However, the extent to which health professionals use these guidelines and provide timely and appropriate fertility-related information to patients is questionable. Fertility should not be neglected by health care providers and a multidisciplinary team is needed to target fertility issues at diagnosis and into survivorship care, providing timely, clear information that includes support, resources, and appropriate referral to fertility specialists. This information will assist in making well-informed decisions about fertility after breast cancer.

BACKGROUND: There has been an exponential increase in the prevalence of e-cigarette use, particularly among youth. However, adult use is also rising, and there have been relatively few qualitative studies with adult users to understand their reasons for use and future use intentions. Such information is needed to inform both prevention and cessation approaches. METHOD: Thirty-one e-cigarette users participated in one of several focus groups assessing the appeal of e-cigarettes as well as comparisons to combustible cigarettes and approved smoking cessation aids. We also obtained perspectives on future use intentions and interest in e-cigarette cessation interventions. Verbatim transcripts were analyzed using the constant comparative method. RESULTS: Participants reported several aspects of e-cigarette appeal as compared to approved cessation treatment options. These included similarities to combustible cigarettes, fewer side effects, and control of e-cigarettes to suit personal preferences. Participants were split on whether they preferred flavors that mimicked or contrasted with their combustible cigarettes (i.e., tobacco vs. alternative flavors, such as candy). Some participants who were unmotivated to quit smoking reported an unanticipated disinterest in continuing use of combustible cigarettes shortly after initiating e-cigarettes. Despite strong interest in reducing nicotine dosage, the majority did not intend to fully discontinue e-cigarettes. CONCLUSIONS: Understanding e-cigarette users' perspectives can inform policy and treatment development. Regulatory and policy initiatives will need to balance the appealing characteristics of e-cigarettes with the potential for negative public health outcomes.