Suchergebnisse

<b><i>Background:</i></b> Previous studies found genetic counseling increased participants' knowledge about hereditary breast and ovarian cancer (HBOC). However, most explored knowledge gain in unaffected women and the scale most commonly used does not include items that may be more pertinent to breast cancer (BC) survivors. <b><i>Aims:</i></b> To explore whether genetic counseling impacts BC survivors' knowledge about HBOC and BC survivor-specific information. <b><i>Methods:</i></b> The National Center for Human Genome Research Knowledge Scale and 5 additional items specific to BC survivors were tested among BC survivors; before genetic counseling (time 1), 2-3 weeks after genetic counseling (time 2), and 6 months following genetic counseling (time 3). <b><i>Results:</i></b> A statistically significant change in knowledge over time was found. Post hoc analyses revealed statistically significant increases in knowledge between time 1 (median = 7.00) and time 2 (median = 10.00; p < 0.005), and between time 1 and time 3 (median = 9.00; p < 0.005). <b><i>Conclusion:</i></b> Knowledge increased following genetic counseling, but the highest total average score at any time was <70% out of 100%. Additional analyses revealed items with low rates of correct response at all three time points, raising several concerns and the consideration of alternative approaches to measuring knowledge.

<i>Background:</i> Little is known about the preferences of at-risk Hispanic women to gain information on hereditary breast and ovarian cancer (HBOC). <i>Aims:</i> This study sought to qualitatively explore preferences for HBOC information among at-risk Mexican, Puerto Rican and Cuban women and to pilot a mock brochure aimed at Hispanic women. <i>Methods:</i> Hispanic women aged 18–65 years with a personal or family history of breast or ovarian cancer participated in a semistructured interview. Data were analyzed using a combination of open-coding and content analysis. <i>Results:</i> Fifty-three women participated in the study. For the majority of content areas, there were no major differences between the subethnicities. All women reported discussing cancer with a doctor after a family member had been diagnosed and discussing cancer within their families; however, the content of the discussion varied. Cuban and Puerto Rican women reported using the Internet routinely for health care information while Mexican women said they did not have access to computers and did not use them. All women liked the content and photos in the brochure but Mexican women thought the reading level was too high. Preferences for the spokesperson focused on the need for Spanish-speaking health care providers. <i>Conclusions:</i> While the data show some similarities, such as patterns of cancer discussion and appreciation of the mock brochure, there were differences between the groups on information preferences. In designing HBOC education information for Hispanic audiences, it is important to consider varied channels for dissemination and preferences for specific types of information across subethnicities.

<b><i>Purpose:</i></b> Frameworks highlighting disease actionability and severity are evolving to address the need to organize results from genome-wide analyses. This approach represents a paradigm shift from consultations focused on one or more genes to multiple genes for multiple disorders. Empirical input from the general population is lacking, yet seems essential for understanding how to maximize patient autonomy and satisfaction in the decision-making process. <b><i>Methods:</i></b> We conducted a cross-sectional online survey with a representative sample of 900 US adults and assessed the participants' perceptions and attitudes toward disease actionability and severity, ranking hypothetical scenarios for these properties, and explored correlations with interest in learning test results. <b><i>Results:</i></b> Most respondents (>85%) rated actionability and severity as useful concepts; 46.6% indicated actionability alone would be adequate for decision making. Over half of them (53.8%) reported being very/extremely confident in their ability to score for actionability and severity. The participants' scoring of medical scenarios varied significantly between individuals. Scores for severity but not actionability were correlated with interest in learning genetic results. Subsets of the respondents projected wanting all results (30%) or no results (16%). The use of expert-created lists was acceptable to 43%. <b><i>Conclusions:</i></b> The respondents from the general population were confident in making their own decisions. The responses suggested different priorities than current expert-driven approaches. The emphasis on binning genes may be missing a complementary, simplifying approach of grouping patients based upon their all/none interest in genomic results. This study illuminates important differences between the general public and genetic experts.

The Tampa Bay Community Cancer Network (TBCCN) is one of the Community Network Program sites funded (2005–10) by the National Cancer Institute's Center to Reduce Cancer Health Disparities. TBCCN was tasked to form a sustainable, community‐based partnership network focused on the goal of reducing cancer health disparities among racial–ethnic minority and medically underserved populations. This article reports evaluation outcome results from a social network analysis and discusses the varying TBCCN partner roles—in education, training, and research—over a span of three years (2007–09). The network analysis included 20 local community partner organizations covering a tricounty area in Southwest Florida. In addition, multiple externally funded, community‐based participatory research pilot projects with community–academic partners have either been completed or are currently in progress, covering research topics including culturally targeted colorectal and prostate cancer screening education, patient navigation focused on preventing cervical cancer in rural Latinas, and community perceptions of biobanking. The social network analysis identified a trend toward increased network decentralization based on betweenness centrality and overall increase in number of linkages, suggesting network sustainability. Degree centrality, trust, and multiplexity exhibited stability over the three‐year time period. These results suggest increased interaction and interdependence among partner organizations and less dependence on the cancer center. Social network analysis enabled us to quantitatively evaluate partnership network functioning of TBCCN in terms of network structure and information and resources flows, which are integral to understanding effective coalition practice based on Community Coalition Action Theory (

Butterfoss and Kegler 2009

). Sharing the results of the social network analysis with the partnership network is an important component of our coalition building efforts. A comprehensive baseline needs assessment for the next five‐year funding phase (2010–15) of TBCCN Community Networks Program Centers (CNP Center) is under way to further evaluate the growth and sustainability of the partnership network, with an emphasis on community‐based intervention research that takes into account culture and literacy.

PURPOSE: To identify potential gaps in attitudes, knowledge, and institutional practices toward lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ) patients, a national survey of oncologists at National Cancer Institute–Designated Comprehensive Cancer Centers was conducted to measure these attributes related to LGBTQ patients and desire for future training and education. METHODS: A random sample of 450 oncologists from 45 cancer centers was selected from the American Medical Association's Physician Masterfile to complete a survey measuring attitudes and knowledge about LGBTQ health and institutional practices. Results were quantified using descriptive and stratified analyses and by a novel attitude summary measure. RESULTS: Of the 149 respondents, there was high agreement (65.8%) regarding the importance of knowing the gender identity of patients, which was contrasted by low agreement (39.6%) regarding the importance of knowing sexual orientation. There was high interest in receiving education regarding the unique health needs of LGBTQ patients (70.4%), and knowledge questions yielded high percentages of "neutral" and "do not know or prefer not to answer" responses. After completing the survey, there was a significant decrease (P < .001) in confidence in knowledge of health needs for LGB (53.1% agreed they were confident during survey assessment v 38.9% postsurvey) and transgender patients (36.9% v 19.5% postsurvey). Stratified analyses revealed some but limited influence on attitudes and knowledge by having LGBTQ friends and/or family members, political affiliation, oncology specialty, years since graduation, and respondents' region of the country. CONCLUSION: This was the first nationwide study, to our knowledge, of oncologists assessing attitudes, knowledge, and institutional practices of LGBTQ patients with cancer. Overall, there was limited knowledge about LGBTQ health and cancer needs but a high interest in receiving education regarding this community.

Purpose.First-degree relatives (FDRs) of prostate cancer (PC) patients should consider multiple concurrent personal risk factors when engaging in informed decision making (IDM) about PC screening. This study assessed perceptions of IDM recommendations and risk-appropriate strategies for IDM among FDRs of varied race/ethnicity.Design.A cross-sectional, qualitative study design was used.Setting.Study setting was a cancer center in southwest Florida.Participants.The study comprised 44 participants (24 PC patients and 20 unaffected FDRs).Method.Focus groups and individual interviews were conducted and analyzed using content analysis and constant comparison methods.Results.Patients and FDRs found the PC screening debate and IDM recommendations to be complex and counterintuitive. They overwhelmingly believed screening saves lives and does not have associated harms. There was a strongly expressed need to improve communication between patients and FDRs. A single decision aid that addresses the needs of all FDRs, rather than one separating by race/ethnicity, was recommended as sufficient by study participants. These perspectives guided the development of an innovative decision aid that deconstructs the screening controversy and IDM processes into simpler concepts and provides step-by-step strategies for FDRs to engage in IDM.Conclusion.Implementing IDM among FDRs is challenging because the IDM paradigm departs from historical messages promoting routine screening. These contradictions should be recognized and addressed for men to participate effectively in IDM. A randomized pilot study evaluating outcomes of the resulting decision aid is underway.