Faculty Bibliography

PURPOSE: Few studies examine the relevance of health-related quality of life (HRQOL) instruments for young adult survivors of childhood cancer (YASCC). This study compared the psychometric properties of two survivor-specific instruments, the Quality of Life-Cancer Survivor (QOL-CS) and Quality of Life in Adult Cancer Survivor (QLACS). METHODS: Data from 151 YASCC who enrolled in cancer/tumor registries of two medical centers were used. We examined construct validity by conducting confirmatory factor analysis using indices of chi-square statistic, comparative fit index, and root mean square error of approximation. We examined convergent/discriminant validity by comparing Pearson's correlation coefficients of homogeneous (e.g., physical functioning and pain) of both instruments versus heterogeneous domains (e.g., physical and psychological functioning). We assessed known-groups validity by examining the extent to which HRQOL differed by late effects and comorbid conditions and calculated relative validity (RV) defined as contrasting F-statistics of individual domains to the domain with the lowest F-statistic. Superior known-groups validity is observed if a domain of one instrument demonstrates a higher RV than other domains of the instruments. RESULTS: YASCC data cannot replicate the constructs both instruments intend to measure, suggesting poor construct validity. Correlations of between-homogeneous and between-heterogeneous domains of both instruments were not discernible, suggesting poor convergent/discriminant validity. Both instruments were equally able to differentiate HRQOL between YASCC with and without late effects and comorbid conditions, suggesting similar known-groups validity. CONCLUSIONS: Neither instrument is superior. Item response theory is suggested to select high-quality items from different instruments to improve HRQOL measure for YASCC.

The disproportionate burden of cancer among U.S. Hispanics is well documented. Historically, epidemiologic data on U.S. Hispanics and cancer have aggregated all Hispanics as one homogeneous group without appreciating the diversity of this population with regard to nativity (nationality/geographic origin). The authors report on the initial efforts of a collaborative academic institutional partnership between a minority-serving institution and a National Cancer Institute-designated cancer center to address cancer health disparities in two Hispanic communities in Puerto Rico and Florida. This article outlines the joint Outreach Program's initial collaborative strategies and activities in community outreach, cancer education, and research that mutually benefit both the Ponce (Puerto Rico) and Tampa (Florida) Hispanic communities. This partnership program used innovative multipronged community-engagement strategies in the two communities to reduce cancer health disparities. Specific projects and lessons learned from three outreach/cancer education projects and two pilot research projects are discussed. The challenges of balancing service and research agendas in communities with disparate levels of resources and infrastructure are summarized to inform future initiatives in this partnership, as well as serve as an example for similar minority-serving institution/cancer center partnerships to reduce cancer health disparities.

This report describes the implementation of a pilot patient navigation (PN) program created to address cervical cancer disparities in a predominantly Hispanic agricultural community. Since November 2009, a patient navigator has provided services to patients of Catholic Mobile Medical Services (CMMS). The PN program has resulted in the need for additional clinic sessions to accommodate the demand for preventive care at CMMS.

STUDY OBJECTIVES: Most pediatric education materials are designed for a parent audience. Social marketing techniques rely on the principles called the "4 P's": product, price, place, and promotion. The objective of this study was to test the design, readability, likelihood to read, and overall opinion of a pediatric fertility preservation brochure with patients, parents, and providers. DESIGN: Qualitative face-to-face interviews. SETTING: The Children's Cancer Center in Tampa, FL, and All Children's Hospital in St. Petersburg, FL. PARTICIPANTS: Male and female cancer patients and survivors aged 12-21 (N = 7), their parents (N = 11), and healthcare providers (N = 6). INTERVENTIONS: Patients, survivors, parents, and healthcare providers were given two versions of gender concordant brochures on fertility preservation designed for both pediatric oncology patients and their parents. OUTCOME MEASURES: Design, readability, likelihood to read, and overall opinion from interviews in order to identify facilitators of involving patients in fertility preservation discussions. RESULTS: Parents and teens differed on the design, readability, and likelihood to read, the highest discord being preferences for medical terminology used in the brochures. While parents remarked that much of the language was 'too advanced,' the majority of teens explained that they understood the terminology and preferred it remained on the brochure. Overall feedback from all three groups was utilized to revise the brochures into final versions to increase the likelihood of reading. CONCLUSION: Information about the development of the 4 P's of social marketing highlights needs from the intended audience. Barriers to patient education in pediatrics can be ameliorated when using the social marketing approach.

Individuals carrying deleterious germline mutations placing them at increased risk for hereditary cancer syndromes (high-risk consumers) often have a great deal of fear and concern over transmitting mutations to their offspring, particularly conditions which are autosomal dominant. Preimplantation genetic diagnosis (PGD) is a procedure that can detect certain germline cancer predisposing mutations present in embryos. The objective of this review was to assess high-risk consumers' knowledge and perceptions of PGD for hereditary cancers. A systematic literature review was conducted through PubMed, Wiley Interscience, PsychInfo, and Cochrane Library databases to identify all articles assessing consumer knowledge and attitudes of PGD for hereditary cancer syndromes. We assessed heterogeneity and the robustness of findings through additional analyses according to study location, hereditary cancer type, and sample size. Thirteen articles remained eligible after the application of specific criteria. Results show a general low level of knowledge about PGD for hereditary cancers, moderate rates of acceptability among high-risk groups, and high levels of need for information about PGD. Individuals in specific risk groups such as those with a personal or family history of hereditary breast and ovarian cancer (HBOC) syndrome or familial adenomatous polyposis (FAP) may benefit from educational information from healthcare professionals about the use of PGD.

BACKGROUND: The American Society for Clinical Oncology (ASCO) established guidelines for fertility preservation for cancer patients. In a national study of US oncologists, we examined attitudes toward the use of fertility preservation among patients with a poor prognosis, focusing on attitudes toward posthumous reproduction. METHOD: A cross-sectional survey was administered via mail and Internet to a stratified random sample of US oncologists. The survey measured demographics, knowledge, attitude, and practice behaviors regarding posthumous reproduction and fertility preservation with cancer patients of childbearing age. RESULTS: Only 16.2% supported posthumous parenting, whereas the majority (51.5%) did not have an opinion. Analysis of variance indicated that attitudes toward posthumous reproduction were significantly related to physician practice behaviors and were dependent on oncologists' knowledge of ASCO guidelines. CONCLUSIONS: Physician attitudes may conflict with the recommended guidelines and may reduce the likelihood that some patients will receive information about fertility preservation. Further education may raise physicians' awareness of poor-prognostic patients' interest in pursuing this technology.

PURPOSE: Fertility is a concern for many cancer patients diagnosed during their reproductive years. Although African American women are more likely to be diagnosed with early breast cancer (i.e.,