Conducting Molecular Epidemiological Research in the Age of HIPAA: A Multi-Institutional Case-Control Study of Breast Cancer in African-American and European-American Women.

Breast cancer in African-American (AA) women occurs at an earlier age than in European-American (EA) women and is more likely to have aggressive features associated with poorer prognosis, such as high-grade and negative estrogen receptor (ER) status. The mechanisms underlying these differences are unknown. To address this, we conducted a case-control study to evaluate risk factors for high-grade ER- disease in both AA and EA women. With the onset of the Health Insurance Portability and Accountability Act of 1996, creative measures were needed to adapt case ascertainment and contact procedures to this new environment of patient privacy. In this paper, we report on our approach to establishing a multicenter study of breast cancer in New York and New Jersey, provide preliminary distributions of demographic and pathologic characteristics among case and control participants by race, and contrast participation rates by approaches to case ascertainment, with discussion of strengths and weaknesses.

Predictors of cervical cancer screening among urban African Americans and Latinas.

OBJECTIVES: To assess predictors of cervical cancer screening among African American and Latina women, a needs assessment survey was conducted, exploring screening behavior, knowledge, and access to health care. METHODS: Participants (N = 248) were recruited at community health fairs, tenants' association meetings, senior centers, and community health clinics to complete a questionnaire. The findings from 194 African American and Latina women are reported. RESULTS: Neither insurance nor physician referral for screening played a role in obtaining cervical cancer screening. Spoken language was influential. CONCLUSION: The findings can now inform interventions to increase screening in this population.

Urban voices: the quality-of-life experience among women of color with breast cancer.

OBJECTIVES: Research on the health-related quality of life (HRQL) among women of color (i.e., Hispanics and African Americans) with breast cancer suggests that they may be at elevated risk for a variety of physical and psychosocial sequelae. The context in which these women perceive, experience, and respond to these HRQL challenges can provide important information for planning a culturally appropriate palliative care treatment plan. METHODS: In an effort to understand the quality of life experience after breast cancer among women of color, this study describes the nature and impact of physical, emotional, and menopausal symptoms among African American (n = 8) and Hispanic (n = 12) breast cancer survivors based on qualitative data gathered through semistructured interviews. Themes were identified and categorized into six HRQL domains: physical (e.g., pain, nausea), psychological (e.g., sadness, irritability), cognitive (e.g., memory problems), sexual (e.g., decreased desire), social/functional (e.g., financial strain, social distress), and spiritual/existential (e.g., increased faith, spiritual coping), with high interrater reliability (kappa = .81). RESULTS: For both groups, physical issues had a major impact on HRQL, with psychological issues being additionally salient for Hispanic women. Most (88%) African American women voiced positive changes in their faith after diagnosis whereas 50% of Hispanic women viewed faith as an important way of coping with breast cancer. SIGNIFICANCE OF RESULTS: This research broadens our understanding of the experience of breast cancer among ethnic minority women, and in turn, offers some key directions for guiding the development of culturally tailored HRQL interventions.

Creating alliances to improve cancer prevention and detection among urban medically underserved minority groups. The East Harlem Partnership for Cancer Awareness.

The East Harlem Partnership for Cancer Awareness (EHPCA) was formed in 1999 to reduce disparities in cancer screening and prevention among medically underserved minorities residing in a large urban community (East Harlem, New York City) by increasing awareness of cancer risk, prevention, and treatment, and promoting greater participation in breast, cervical, colorectal, and prostate cancer screening and early detection. The Partnership augments a 20-year collaboration between an academic medical center, a public hospital, and 2 community health centers. Needs assessments were conducted to inform program development. Cancer education, outreach, and screening programs were developed based on the PRECEED-PROCEED model for health education and health promotion programming. Needs assessments revealed that although the majority of the population (86%) was insured and had a source of primary care, cancer screening guidelines for breast, cervical, prostate, and colorectal cancers were not being followed. Outreach strategies, targeted curricula, educational sessions, and screening programs have been developed and implemented to improve knowledge levels and increase screening participation. The EHPCA is a model of a successful partnership among the public and private sectors to reduce disparities in cancer screening and prevention in a diverse, medically underserved, urban minority community. Future efforts to reduce cancer screening disparities in this population will include patient navigation and improved access to standard-of-care screening such as colonoscopy. Cancer 2006. (c) 2006 American Cancer Society.

Enhancing the readability of materials describing genetic risk for breast cancer.

BACKGROUND: The number of individuals contemplating genetic testing is increasing, but the current materials and overall subject matter remain complex and not easily understood by many. The goal of this project was to evaluate efforts to revise and increase the readability of an existing information packet describing genetic risk for breast cancer. METHODS: Evaluation was conducted in two stages through two related studies. In Study 1, a focus group of multiethnic breast cancer survivors was assembled to obtain feedback on images included in the revised breast cancer genetics information packet. In Study 2, African American adult students in a literacy program evaluated the revised images (based on the feedback of the focus group in Study 1) and text of the information packet and provided ratings on readability, format, and appearance. RESULTS: Responses from Study 1 participants suggested that some of the images created for the packet needed to be clearer in the concepts they were intended to convey. In Study 2, ratings of adult learners suggested difficulty with word comprehension in spite of the inclusion of definitions and a glossary. The reading level achieved was markedly lower than the college reading level required by the original information packet and other patient-directed cancer genetics materials. CONCLUSIONS: Although efforts to clarify written materials in order to better serve patients with low literacy received generally favorable responses, continued efforts to create more user-friendly patient education materials are warranted.