Genetic counseling and testing for HNPCC significantly influences the use of colonic endoscopy and adherence to recommendations for colon cancer screening.

Genetic counseling and testing offers the potential to focus cancer screening resources in individuals truly at increased risk, thereby reducing mortality and morbidity. Fears of discrimination and concerns about psychological and psychosocial issues may present barriers to the use of current cancer prevention strategies, including genetic counseling and testing.

Background This study examined racial/ethnic differences among patients in clinical trial (CT) enrollment, refusal rates, ineligibility, and desire to participate in research within the National Cancer Institute's Community Cancer Centers Program (NCCCP) Clinical Trial Screening and Accrual Log. Methods Data from 4509 log entries were evaluated in this study. Four logistic regression models were run using physical/medical conditions, enrollment into a CT, patient eligible but declined a CT, and no desire to participate in research as dependent variables. Results Age ≥ 65 (OR=1.51, CI: 1.28 -1.79), males (OR=2.28, CI: 1.92 – 2.71), and non-Hispanic black race (OR=1.53, CI: 1.2 – 1.96) were significantly associated with more physical/medical conditions. Age ≥ 65 was significantly associated with lower CT enrollment (OR=0.83, CI: 0.7 - 0.98). Males (OR=0.78, CI: 0.65 -0.94) and a higher grade level score for consent form readability (OR=0.9, CI: 0.83 - 0.97) were significantly associated with lower refusal rates. Consent page length ≥ 20 was significantly associated with lower odds of “no desire to participate in research” among CT decliners (OR=0.75, CI: 0.58 – 0.98). Conclusion : There were no racial/ethnic differences in CT enrollment, refusal rates, or “no desire to participate in research” as the reason given for CT refusal. Higher odds of physical/medical conditions were associated with older age, males, and non-Hispanic blacks. Better management of physical/medical conditions before and during treatment may increase the pool of eligible patients for CTs. Future work should examine the role of co-morbidities, sex, age, and consent form characteristics on CT participation.

Purpose: This study evaluated whether phone results were equivalent to in-person result disclosure for individuals undergoing BRCA1/2 predisposition genetic testing. Methods: A total of 111 of 136 subjects undergoing education and counseling for BRCA1/2 predisposition genetic testing agreed to randomization to phone or in-person result disclosure. Content and format for both sessions were standardized. Data from the State-Trait Anxiety Inventory and the Psychological General Well-Being index were collected at baseline and then again at 1 week and 3 months after disclosure of test results. Baseline measures were administered after the following had occurred: counseling/education session had been conducted, informed consent had been obtained, and decision to be tested had been made. Satisfaction and cost assessments were administered after the result session. At 1 week, participants were asked their preferred method of result disclosure. Results: There were no differences in anxiety and general well-being measures between 50 phone and 52 in-person results disclosure. Both groups reported similar rates of satisfaction with services. Among those with a preference, 77% preferred the notification method assigned. There was a statistically significant preference for phone results among the 23% who did not prefer the method assigned. Greater costs were associated with in-person result disclosure. Conclusions: These data suggest that phone results are a reasonable alternative to traditional in-person BRCA1/2 genetic test disclosure without any negative psychologic outcomes or compromise in knowledge. However, further study is needed in a more clinically representative population to confirm these findings. Genet Med 2007:9(8):487-495. Key Words: genetic testing, genetic counseling, BRCA1/BRCA2, result disclosure, risk communicationBreast cancer is one of the most common forms of cancer in American women and the second leading cause of cancer mortality. More than 214,000 new breast cancer cases will be diagnosed in 2006, and approximately 5% to 10% of those cases will be associated with an inherited germline mutation in a dominant susceptibility allele. 1,2 As a consequence, the absolute number of breast cancer cases diagnosed annually that are associated with a genetic predisposition is considerable. The most common high penetrance breast cancer susceptibility alleles are BRCA1 and BRCA2, which account for at least half of all genetically predisposed breast cancer. [3][4][5] Family history has long been recognized as a risk factor for breast cancer, but it was not until the availability of clinical testing for mutations in BRCA1 and BRCA2 that breast cancer risk-assessment programs including genetic education, counseling, and testing became more widely available.One of the primary aims of cancer genetic education and counseling is autonomous informed decision-making with adequate psychologic support. With those goals in mind, many cancer genetic programs are multidisciplinary and see patients

Use of screening logs to document enrollment barriers at the local level can facilitate development of strategies to enhance clinical trial accrual.

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BackgroundThe value of community-based cancer research has long been recognized. In addition to the National Cancer Institute’s Community Clinical and Minority-Based Oncology Programs established in 1983, and 1991 respectively, the National Cancer Institute established the National Cancer Institute Community Cancer Centers Program in 2007 with an aim of enhancing access to high-quality cancer care and clinical research in the community setting where most cancer patients receive their treatment. This article discusses strategies utilized by the National Cancer Institute Community Cancer Centers Program to build research capacity and create a more entrenched culture of research at the community hospitals participating in the program over a 7-year period.MethodsTo facilitate development of a research culture at the community hospitals, the National Cancer Institute Community Cancer Centers Program required leadership or chief executive officer engagement; utilized a collaborative learning structure where best practices, successes, and challenges could be shared; promoted site-to-site mentoring to foster faster learning within and between sites; required research program assessments that spanned clinical trial portfolio, accrual barriers, and outreach; increased identification and use of metrics; and, finally, encouraged research team engagement across hospital departments (navigation, multidisciplinary care, pathology, and disparities) to replace the traditionally siloed approach to clinical trials.LimitationsThe health-care environment is rapidly changing while complexity in research increases. Successful research efforts are impacted by numerous factors (e.g. institutional review board reviews, physician interest, and trial availability). The National Cancer Institute Community Cancer Centers Program sites, as program participants, had access to the required resources and support to develop and implement the strategies described. Metrics are an important component yet often challenging to identify and collect. The model requires a strong emphasis on outreach that challenges hospitals to improve and expand their reach, particularly into underrepresented populations and catchment areas. These efforts build on trust and a referral pipeline within the community which take time and significant commitment to establish.ConclusionThe National Cancer Institute Community Cancer Centers Program experience provides a relevant model to broadly address creating a culture of research in community hospitals that are increasingly networked via systems and consortiums. The strategies used align well with the National Cancer Institute—American Society of Clinical Oncology Accrual Symposium recommendations for patient-/community-, physician-/provider-, and site-/organizational-level approaches to clinical trials; they helped sites achieve organizational culture shifts that enhanced their cancer research programs. The National Cancer Institute Community Cancer Centers Program hospitals reported that the strategies were challenging to ...

Identified content provides a template for genetics education programs for nurses. Genetics nursing education was perceived to have positive outcomes for both nurses and clients.