Faculty Bibliography

Participation in biobanking among individuals with familial risk for hereditary cancer (IFRs) and underserved/minority populations is vital for biobanking research. To address gaps in researcher knowledge regarding ethical concerns of these populations, we developed a web-based curriculum. Based on formative research and expert panel assessments, a curriculum and website was developed in an integrative, systematic manner. Researchers were recruited to evaluate the curriculum. Public health graduate students were recruited to pilot test the curriculum. All 14 researchers agreed the curriculum was easy to understand, adequately addressed the domains, and contained appropriate post-test questions. The majority evaluated the dialgoue animations as interesting and valuable. Twenty-two graduate students completed the curriculum, and 77 % improved their overall test score. A web-based curriculum is an acceptable and effective way to provide information to researchers about vulnerable populations' biobanking concerns. Future goals are to incorporate the curriculum with larger organizations.

PURPOSE: This study aims to examine healthcare provider perceptions of cancer-related infertility and fertility preservation (FP) in an underserved population and to highlight cognitive and structural barriers to use. METHODS: In-depth, semi-structured interviews were conducted with a sample of 16 healthcare providers participating in a larger ethnographic study on cancer survivorship and cancer-related infertility in Puerto Rico, an unincorporated US territory. Interviews were conducted in-person, audio-recorded, transcribed verbatim, and coded using the constant comparative method. RESULTS: Providers identified several barriers to FP in Puerto Rico: high cost in relation to income levels, lack of insurance coverage, gaps in provider knowledge of fertility clinics and financial assistance, lower prioritization of quality-of-life needs leading to inconsistent physician disclosure of fertility risks, geographical location of fertility clinics, and logistical challenges to maintaining FP offerings. Two factors act as facilitators: a high value placed on patient-provider communication and relationships and the formation of local alliances between the oncology and reproductive medicine fields, potentially leading to increased cross-specialty communication and referral. CONCLUSIONS: Infertility is a continuing source of distress for cancer patients and survivors, and barriers to FP vary cross-culturally. In Puerto Rico, context-specific factors indicate potential areas of intervention. Greater awareness of fertility risks and options can be fostered through physician training in conjunction with organizational measures targeting cost barriers.

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.

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.

OBJECTIVE: We describe the impact of ENRICH (Educating Nurses about Reproductive Issues in Cancer Healthcare), a web-based communication-skill-building curriculum for oncology nurses regarding AYA fertility and other reproductive health issues. METHODS: Participants completed an 8-week course that incorporated didactic content, case studies, and interactive learning. Each learner completed a pre- and post-test assessing knowledge and a 6-month follow-up survey assessing learner behaviors and institutional changes. RESULTS: Out of 77 participants, the majority (72%) scored higher on the post-test. Fifty-four participants completed the follow-up survey: 41% reviewed current institutional practices, 20% formed a committee, and 37% gathered patient materials or financial resources (22%). Participants also reported new policies (30%), in-service education (37%), new patient education materials (26%), a patient navigator role (28%), and workplace collaborations with reproductive specialists (46%). CONCLUSION: ENRICH improved nurses' knowledge and involvement in activities addressing fertility needs of oncology patients. Our study provides a readily accessible model to prepare oncology nurses to integrate American Society of Clinical Oncology guidelines and improve Quality Oncology Practice Initiative measures related to fertility. PRACTICE IMPLICATIONS: Nurses will be better prepared to discuss important survivorship issues related to fertility and reproductive health, leading to improved quality of life outcomes for AYAs.