Faculty Bibliography

PURPOSE: 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. METHODS: Female adolescents diagnosed with cancer aged 12-18 years at study (N=14) were administered a 10-item values clarification tool to pilot test the readability and relevance of the items on reproductive concerns, followed by a cognitive debriefing interview asking participants how they would respond to each item. These qualitative responses were assessed for coping style type using the constant comparative approach. RESULTS: 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. CONCLUSION: 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.

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: To examine the characteristics of women seeking infertility evaluation and treatment. DESIGN: Cross-sectional survey based on in-person interviews, followed by two-step hurdle analysis. SETTING: Not applicable. PATIENT(S): 4,558 married or cohabitating women ages 25 to 44 years. INTERVENTION(S): None. MAIN OUTCOME MEASURE(S): Likelihood of seeking a preliminary infertility evaluation and of seeking infertility treatment once evaluated, and the treatment type provided. RESULT(S): Of 623 women (13.7%) who reported seeking an infertility evaluation, 328 reported undergoing subsequent infertility treatment. Age at marriage, marital status, education, health insurance status, race/ethnicity, and religion were associated with the likelihood of seeking infertility evaluation. For example, the predicted probability that a non-white woman who married at age 25 will seek evaluation was 12%. This probability increased to 34% for white women with a graduate degree who had married at age 30. Among women who were evaluated, income, employment status, and ethnicity correlated strongly with the likelihood of seeking infertility treatment. Infertility drug therapy was the most frequent treatment used, and reproductive surgery and in vitro fertilization (IVF) were used the least often. CONCLUSION(S): The use of infertility services is not random. Understanding the sociodemographic factors correlated with use may assist new couples with family planning. Roughly 50% of the women evaluated for infertility progressed to treatment, and only a small proportion were treated with more advanced assisted reproductive technologies such as in vitro fertilization. Future research aimed at improving access to effective health-care treatments within the boundaries of affordability is warranted.

Colorectal cancer screening (CRCS) rates are low among men and women who seek health care at federally qualified health centers (FQHCs). This study explores health care providers' perspectives about their patient's motivators and impediments to CRCS and receptivity to preparatory education. A mixed methods design consisting of in-depth interviews, focus groups, and a short survey is used in this study. The participants of this study are 17 health care providers practicing in FQHCs in the Tampa Bay area. Test-specific patient impediments and motivations were identified including fear of abnormal findings, importance of offering less invasive fecal occult blood tests, and need for patient-centered test-specific educational materials in clinics. Opportunities to improve provider practices were identified including providers' reliance on patients' report of symptoms as a cue to recommend CRCS and overemphasis of clinic-based guaiac stool tests. This study adds to the literature on CRCS test-specific motivators and impediments. Providers offered unique approaches for motivating patients to follow through with recommended CRCS and were receptive to in-clinic patient education. Findings readily inform the design of educational materials and interventions to increase CRCS in FQHCs.

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.

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.

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.

BACKGROUND: Premenopausal women represent approximately 35% of new breast cancer diagnoses. Diagnosis and treatment may lead to substantial disruption in quality of life (QOL). METHODS: Premenopausal patients (aged 18 to 50 years) treated for nonmetastatic breast cancer completed a mailed questionnaire. Multiple self-reported QOL measures and clinical data were collected. Cluster analysis and Cronbach's alpha were used to validate the survey. Analysis of variance was performed for specific interventions. Lower interference scores conveyed higher QOL. RESULTS: The response rate was 49.8%. Cronbach's alpha was 0.96. Immediate contralateral prophylactic mastectomy (CPM) carried the highest interference (mean, 3.3148) with sexuality compared with no CPM (mean, 2.85) or delayed CPM (P = .03). Breast conservation had the least interference with appearance (P < .01) and work and finances (P = .02). CONCLUSIONS: Therapeutic mastectomy and CPM with or without reconstruction may adversely affect QOL. These findings suggest that the choice and timing of interventions may significantly affect patient satisfaction.