Louise Wideroff

National Cancer Institute (USA), Maryland, United States

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Publications (37)214.03 Total impact

  • [Show abstract] [Hide abstract] ABSTRACT: Genetic testing for several cancer susceptibility syndromes is clinically available; however, existing data suggest limited population awareness of such tests. To examine awareness regarding cancer genetic testing in the U.S. population aged ≥25 years in the 2000, 2005, and 2010 National Health Interview Surveys. The weighted percentages of respondents aware of cancer genetic tests, and percent changes from 2000-2005 and 2005-2010, overall and by demographic, family history, and healthcare factors were calculated. Interactions were used to evaluate the patterns of change in awareness between 2005 and 2010 among subgroups within each factor. To evaluate associations with awareness in 2005 and 2010, percentages were adjusted for covariates using multiple logistic regression. The analysis was performed in 2012. Awareness decreased from 44.4% to 41.5% (p<0.001) between 2000 and 2005, and increased to 47.0% (p<0.001) in 2010. Awareness increased between 2005 and 2010 in most subgroups, particularly among individuals in the South (pinteraction=0.03) or with a usual place of care (pinteraction=0.01). In 2005 and 2010, awareness was positively associated with personal or family cancer history and high perceived cancer risk, and inversely associated with racial/ethnic minorities, age 25-39 or ≥60 years, male gender, lower education and income levels, public or no health insurance, and no provider contact in 12 months. Despite improvement from 2005 to 2010, ≤50% of the U.S. adult population was aware of cancer genetic testing in 2010. Notably, disparities persist for racial/ethnic minorities and individuals with limited health care access or income.
    No preview · Article · May 2014 · American journal of preventive medicine
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    [Show abstract] [Hide abstract] ABSTRACT: We thank the contributing authors and the anonymous reviewers who made this special issue possible. We hope that this issue will stimulate more research at the frontline of translational cancer genomics, behavioral science, clinical care, and public health.
    Full-text · Article · Nov 2012 · Journal of Cancer Epidemiology
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    [Show abstract] [Hide abstract] ABSTRACT: Knowledge of family cancer history is essential for estimating an individual's cancer risk and making clinical recommendations regarding screening and referral to a specialty cancer genetics clinic. However, it is not clear if reported family cancer history is sufficiently accurate for this purpose. In the population-based 2001 Connecticut Family Health Study, 1019 participants reported on 20 578 first-degree relatives (FDR) and second-degree relatives (SDR). Of those, 2605 relatives were sampled for confirmation of cancer reports on breast, colorectal, prostate, and lung cancer. Confirmation sources included state cancer registries, Medicare databases, the National Death Index, death certificates, and health-care facility records. Sensitivity, specificity, positive predictive value, and negative predictive value were calculated for reports on lung, colorectal, breast, and prostate cancer and after stratification by sex, age, education, and degree of relatedness and used to estimate report accuracy. Pairwise t tests were used to evaluate differences between the two strata in each stratified analysis. All statistical tests were two-sided. Overall, sensitivity and positive predictive value were low to moderate and varied by cancer type: 60.2% and 40.0%, respectively, for lung cancer reports, 27.3% and 53.5% for colorectal cancer reports, 61.1% and 61.3% for breast cancer reports, and 32.0% and 53.4% for prostate cancer reports. Specificity and negative predictive value were more than 95% for all four cancer types. Cancer history reports on FDR were more accurate than reports on SDR, with reports on FDR having statistically significantly higher sensitivity for prostate cancer than reports on SDR (58.9% vs 21.5%, P = .002) and higher positive predictive value for lung (78.1% vs 31.7%, P < .001), colorectal (85.8% vs 43.5%, P = .004), and breast cancer (79.9% vs 53.6%, P = .02). General population reports on family history for the four major adult cancers were not highly accurate. Efforts to improve accuracy are needed in primary care and other health-care settings in which family history is collected to ensure appropriate risk assessment and clinical care recommendations.
    Full-text · Article · May 2011 · Journal of the National Cancer Institute
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    [Show abstract] [Hide abstract] ABSTRACT: Cervical cancer prevention programs are being reconfigured to incorporate human papillomavirus (HPV) testing and vaccination. To define priority areas for prevention efforts, we examined the geographic distribution of cervical cancer screening, incidence, stage, and mortality in the United States, prior to the introduction of HPV-based prevention technologies. County-level cervical cancer incidence data from 37 central registries were obtained from Surveillance, Epidemiology, and End Results and North American Association of Central Cancer Registries. A spatial-temporal model that accounted for demographic and behavioral attributes was used to generate a complete view of county-level incidence from 1995 to 2004, including counties with missing data. Distribution of stage at diagnosis was examined by registry. Counties with high mortality and infrequent screening were identified using vital statistics and newly available county-level screening estimates. Compared with non-Hispanic whites and Asian and Pacific Islanders, incidence rates were higher among non-Hispanic black, American Indian and Alaska Native, and Hispanic women. Counties with infrequent screening often experienced elevated incidence and mortality rates and were located in states with suboptimal stage at diagnosis profiles. Affected areas included Appalachia, the southeastern Atlantic states, and the lower Mississippi Valley. Elevated death rates were experienced in central counties of large metropolitan areas. Geographic and racial/ethnic variability were evident in cervical cancer incidence and mortality. Women living in areas with endemic poverty would benefit from access to HPV-based prevention technologies. These findings provide a baseline for monitoring progress in cervical cancer control in the era of HPV-based prevention.
    Full-text · Article · Mar 2011 · Cancer Epidemiology Biomarkers & Prevention
  • [Show abstract] [Hide abstract] ABSTRACT: US cervical cancer screening recommendations have not changed since the human papillomavirus (HPV) vaccine introduction in 2006, but epidemiological and cost-effectiveness studies indicate that recommendations will need to change for fully vaccinated women. We evaluated physician intentions regarding HPV vaccine's impact on future screening. A nationally representative sample of 1212 primary care physicians was surveyed in 2006-2007 (response rate: 67.5%). Our study included 1114 physicians who provided Pap testing. Questions covered Pap test screening practices and intentions regarding HPV vaccine's impact on screening. Distribution differences were assessed using chi(2) statistics; multivariate analyses were performed. Overall, 40.7% (95% confidence interval (CI): 37.6-43.8%) of physicians agreed that the HPV vaccine will affect screening initiation, and 38.2% (35.0-41.5%) agreed that vaccination will affect screening frequency. Significant differences in responses were found by specialty; internists were more likely to agree that vaccination would impact screening than other specialties. Belief in the effectiveness of new screening technologies was associated with intention to change screening initiation (odds ratio (OR) = 1.66 (1.20-2.31)) and frequency (OR = 1.99 (1.40-2.83)). Adherence to current Pap test screening interval guidelines was associated with intention to change screening frequency (OR = 1.39 (1.01-1.91)). Many providers anticipate adjusting screening for vaccinated women, but a significant group believes nothing will change or are unsure. The present study provides important baseline data on intentions in the period preceding widespread vaccine diffusion and may help explain current and future trends in practice patterns.
    No preview · Article · Sep 2010 · Sexual Health
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    [Show abstract] [Hide abstract] ABSTRACT: Guidelines recommend screening for cervical cancer among women 30 years or older 3 years after a normal Papanicolaou test (hereinafter referred to as Pap test) result or a combined normal screening result (normal Pap/negative human papillomavirus [HPV] test results). We assessed reported recommendations by US primary care physicians (PCPs) on screening intervals that incorporate HPV cotesting compared with Pap testing alone. From September 1, 2006, through May 31, 2007, we conducted a mailed survey of a representative sample of 1212 PCPs, of whom 950 performed Pap tests and recommended the HPV test for screening or management. The main outcome measure included self-reported data on timing of screening intervals for women with normal results using clinical vignettes. Among Pap test providers who recommend HPV testing, 31.8% reported that they would conduct the next Pap test in 3 years for a 35-year-old woman with 3 normal Pap test results. For a 35-year-old woman with a normal Pap test result and a negative HPV test finding, only 19.0% would conduct the next Pap test in 3 years. Most remaining physicians would conduct the Pap test more frequently. Most PCPs did not recommend a second HPV test or recommended the next HPV test at the same frequency as the Pap test. Physician specialty was strongly associated with guideline-consistent recommendations for the next Pap or HPV test. A lower proportion of PCPs recommend extending screening intervals to 3 years with an HPV cotest than those screening with the Pap test alone. Implementation of effective interventions and strategies that improve physician adherence to recommendations will be important for efficient screening practices.
    Preview · Article · Jun 2010 · Archives of internal medicine
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    Phuong L. Mai · L Wideroff · M H Greene · B I Graubard
    [Show abstract] [Hide abstract] ABSTRACT: A positive family history is a known risk factor for several cancers; thus, obtaining a thorough family cancer history is essential in cancer risk evaluation and prevention management. The Family Health Study, a telephone survey in Connecticut, was conducted in 2001. A total of 1,019 participants with demographic information and family cancer history were included in this study. Prevalence of a positive family history of breast, colorectal, prostate, and lung cancer for first- and second-degree relatives was estimated. Logistic regression was used to compare prevalence by demographic factors. A positive family history among first-degree relatives was reported by 10.9% (95% Confidence Interval, CI = 8.8-13.3) of respondents for breast cancer, 5.1% (95% CI = 3.9-6.7) for colorectal cancer, 7.0% (95% CI = 5.2-9.4) for prostate cancer, and 6.4% (95% CI = 4.9-8.3) for lung cancer. The reported prevalence of family history of specific cancers varied by sex, age and race/ethnicity of the respondents. Family history prevalence for 4 of the most common adult solid tumors is substantial and the reported prevalence varied by respondent characteristics. Additional studies are needed to evaluate tools to promote accurate reporting of family history of cancer.
    Full-text · Article · Apr 2010 · Public Health Genomics
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    [Show abstract] [Hide abstract] ABSTRACT: Although family history of cancer is widely ascertained in research and clinical care, little is known about assessment methods, accuracy, or other quality measures. Given its widespread use in cancer screening and surveillance, better information is needed about the clarity and accuracy of family history information reported in the general population. This telephone survey in Connecticut examined coherence and completeness of reports from 1,019 respondents about 20,504 biological relatives. Of 2,657 cancer reports, 97.7% were judged consistent with malignancy (versus benign or indeterminate conditions); 79% were site specific, 10.1% had unspecified cancer sites, and 8.6% had "ill-defined" sites. Only 6.1% of relatives had unknown histories. Unknown histories and ambiguous sites were significantly higher for second-degree relatives. The adjusted percentage of first-degree relative reports with ambiguous sites increased with decreasing education and African-American race of survey respondents, and with deceased vital status of relatives. Ambiguous second-degree relative reports were also associated with deceased vital status and with male gender of respondents. These findings suggest that family history of cancer reports from the general population are generally complete and coherent. Strategies are needed to improve site specificity and thus maximize the utility of such information in primary care settings.
    Full-text · Article · Mar 2010 · Cancer Epidemiology Biomarkers & Prevention
  • [Show abstract] [Hide abstract] ABSTRACT: Cervical cancer screening guidelines were substantially revised in 2002 and 2003. Little information is available about primary care physicians' current Papanicolaou (Pap) test screening practices, including initiation, frequency, and stopping. To assess current Pap test screening practices in the United States. Cross-sectional survey. Nationally representative sample of physicians during 2006 to 2007. 1212 primary care physicians. The survey included questions about physician and practice characteristics and recommendations for Pap screening presented as clinical vignettes describing women by age and by sexual and screening histories. A composite measure-guideline-consistent recommendations-was created by using responses to vignettes in which major guidelines were uniform. Most physicians reported providing Pap tests to their eligible patients (91.0% [95% CI, 89.0% to 92.6%]). Among Pap test providers (n = 1114), screening practices, including number of tests ordered or performed, use of patient reminder systems, and cytology method used, varied by physician specialty (P < 0.001). Although most Pap test providers reported that screening guidelines were very influential in their clinical practice, few had guideline-consistent recommendations for starting and stopping Pap screening across multiple vignettes (22.3% [CI, 19.9% to 25.0%]). Guideline-consistent recommendations varied by specialty (obstetrics/gynecology, 16.4%; internal medicine, 27.5%; and family or general practice, 21.1%). Compared with obstetricians/gynecologists, internal medicine specialists and family or general practice specialists were more likely to have guideline-consistent screening recommendations (odds ratio, 1.98 [CI, 1.22 to 3.23] and 1.45 [CI, 0.99 to 2.13], respectively) in multivariate analysis. Physician self-report may reflect idealized rather than actual practice. Primary care physicians' recommendations for Pap test screening are not consistent with screening guidelines, reflecting overuse of screening. Implementation of effective interventions that focus on potentially modifiable physician and practice factors is needed to improve screening practice. National Cancer Institute, Centers for Disease Control and Prevention, and Agency for Healthcare Research and Quality.
    No preview · Article · Nov 2009 · Annals of internal medicine
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    [Show abstract] [Hide abstract] ABSTRACT: In recent decades, extensive resources have been invested to develop cellular, molecular and genomic technologies with clinical applications that span the continuum of cancer care. In December 2006, the National Cancer Institute sponsored the first workshop to uniquely examine the state of health services research on cancer-related cellular, molecular and genomic technologies and identify challenges and priorities for expanding the evidence base on their effectiveness in routine care. This article summarizes the workshop outcomes, which included development of a comprehensive research agenda that incorporates health and safety endpoints, utilization patterns, patient and provider preferences, quality of care and access, disparities, economics and decision modeling, trends in cancer outcomes, and health-related quality of life among target populations. Ultimately, the successful adoption of useful technologies will depend on understanding and influencing the patient, provider, health care system and societal factors that contribute to their uptake and effectiveness in 'real-world' settings.
    Full-text · Article · Feb 2009 · Public Health Genomics
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    [Show abstract] [Hide abstract] ABSTRACT: In the US, federal and state behavioral surveillance systems routinely monitor self-reported sexual behavior and Papanicolaou (Pap) test use to identify high-risk populations, trends, and disparities and to guide and evaluate interventions for cervical cancer prevention and control. Clinical uptake of human papillomavirus (HPV) vaccination and testing necessitates the expansion of behavioral surveillance systems. Cervical disease is the main focus of HPV-related behavioral surveillance because of greater cancer incidence and mortality relative to other susceptible organs, and the availability of effective technologies for prevention and control. In the current study, a framework is presented for the types of behaviors to monitor, their conceptual and operational definitions, target populations, and evidence supporting the reliability and validity of self-report measures. An overview is also provided of 8 population-based and 2 provider-based data systems that are nationally representative and accessible for behavioral surveillance research. Ongoing surveillance at the national, state, and local level is critical for monitoring the dissemination of HPV technologies and their impact on reducing disparities in the detection of precursor lesions, incidence of invasive cancer, and mortality.
    Full-text · Article · Nov 2008 · Cancer
  • [Show abstract] [Hide abstract] ABSTRACT: Population-based estimates of biological family size can be useful for planning genetic studies, assessing how distributions of relatives affect disease associations with family history and estimating prevalence of potential family support. Mean family size per person is estimated from a population-based telephone survey (n = 1,019). After multivariate adjustment for demographic variables, older and non-White respondents reported greater mean numbers of total, first- and second-degree relatives. Females reported more total and first-degree relatives, while less educated respondents reported more second-degree relatives. Demographic differences in family size have implications for genetic research. Therefore, periodic collection of family structure data in representative populations would be useful.
    No preview · Article · Feb 2008 · Community Genetics
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    [Show abstract] [Hide abstract] ABSTRACT: Blood transfusions may influence the recipients' cancer risks both through transmission of biologic agents and by modulation of the immune system. However, cancer occurrence in transfusion recipients remains poorly characterized. We used computerized files from Scandinavian blood banks to identify a cohort of 888,843 cancer-free recipients transfused after 1968. The recipients were followed from first registered transfusion until the date of death, emigration, cancer diagnosis, or December 31, 2002, whichever came first. Relative risks were expressed as ratios of the observed to the expected numbers of cancers, that is, standardized incidence ratios (SIRs), using incidence rates for the general Danish and Swedish populations as a reference. All statistical tests were two-sided. During 5,652,918 person-years of follow-up, 80,990 cancers occurred in the transfusion recipients, corresponding to a SIR of 1.45 (95% confidence interval [CI] = 1.44 to 1.46). The SIR for cancer overall decreased from 5.36 (95% CI = 5.29 to 5.43) during the first 6 months after transfusion to 1.10 or less for follow-up periods more than 2 years after the transfusion. However, the standardized incidence ratios for cancers of the tongue, mouth, pharynx, esophagus, liver, and respiratory and urinary tracts and for squamous cell skin carcinoma remained elevated beyond 10 years after the transfusion. The marked increase in cancer risk shortly after a blood transfusion may reflect the presence of undiagnosed occult cancers with symptoms that necessitated the blood transfusion. The continued increased risk of tobacco- and alcohol-related cancers suggests that lifestyle and other risk factors related to conditions prompting transfusion rather than transfusion-related exposures per se are important to the observed cancer occurrence in the recipients.
    Full-text · Article · Jan 2008 · Journal of the National Cancer Institute
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    [Show abstract] [Hide abstract] ABSTRACT: Transfusion safety rests heavily on the health of blood donors. Although they are perceived as being healthier than average, little is known about their long-term disease patterns and to which extent the blood banks' continuous efforts to optimize donor selection has resulted in improvements. Mortality and cancer incidence among blood donors in Sweden and Denmark was investigated. All computerized blood bank databases were compiled into one database, which was linked to national population and health data registers. With a retrospective cohort study design, 1,110,329 blood donors were followed for up to 35 years from first computer-registered blood donation to death, emigration, or December 31, 2002. Standardized mortality and incidence ratios expressed relative risk of death and cancer comparing blood donors to the general population. Blood donors had an overall mortality 30 percent lower (99% confidence interval [CI] 29%-31%) and cancer incidence 4 percent lower (99% CI 2%-5%) than the background population. Mortality rates and cancer incidence were lowest for outcomes that are recognized as being related to lifestyle factors such as smoking or to the selection criteria for blood donation. Blood donors recruited in more recent years exhibited a lower relative mortality than those who started earlier. Blood donors enjoy better than average health. Explicit and informal requirements for blood donation in Scandinavia, although mostly of a simple nature, have successfully refined the selection of a particularly healthy subpopulation.
    Full-text · Article · Dec 2007 · Transfusion
  • [Show abstract] [Hide abstract] ABSTRACT: Inclusion of relatives of individuals at risk for or diagnosed with disease is critical for many public health studies. Debate exists about how to recruit relatives in a way that both protects their privacy and allows for reasonable participation rates. To inform the debate, empirical data is needed. This research evaluates an investigator-driven recruitment strategy enabling index subjects to first discuss the study with relatives. We assessed whether index subjects' willingness to permit investigators to contact relatives was associated with their own and their relatives' demographic characteristics. In 2001, we conducted a random digit dial phone survey in Connecticut to determine the accuracy of family cancer history reported by 1,380 index subjects (response rate=70%). After obtaining a family roster of 1st and 2nd degree relatives, a random sample was invited to participate. The majority of index subjects (65.1%) contacted at least one relative to discuss the study, although non-whites were less likely to do so than whites (OR=0.52 [0.32-0.84]). Furthermore, 67.4% gave investigators permission to contact some or all sampled relatives for an interview. After adjustment for educational level, index subjects were more likely to give investigators permission to contact relatives with a history of cancer (OR=1.19 [1.08-3.37]), and those with whom they had a supportive relationship (OR=5.13 [2.66-9.92]). Overall, 90% of the 717 relatives whom the investigators were given permission to contact agreed to participate. The recruitment strategy we examined appears effective for population based research, as high proportions of index subjects were willing to give investigators contact permission.
    No preview · Conference Paper · Nov 2007
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    [Show abstract] [Hide abstract] ABSTRACT: Although mechanisms for detection of short-term complications after blood transfusions are well developed, complications with delayed onset, notably transmission of chronic diseases such as cancer, have been difficult to assess. Our aim was to investigate the possible risk of cancer transmission from blood donors to recipients through blood transfusion. We did a register-based retrospective cohort study of cancer incidence among patients who received blood from donors deemed to have a subclinical cancer at the time of donation. These precancerous donors were diagnosed with a cancer within 5 years of the donation. Data from all computerised blood bank registers in Sweden and Denmark gathered between 1968 and 2002 were merged into a common database. Demographic and medical data, including mortality and cancer incidence, were ascertained through linkages with nationwide, and essentially complete, population and health-care registers. The risk of cancer in exposed recipients relative to that in recipients who received blood from non-cancerous donors was estimated with multivariate Poisson regression, adjusting for potential confounding factors. Of the 354 094 transfusion recipients eligible for this analysis, 12,012 (3%) were exposed to blood products from precancerous donors. There was no excess risk of cancer overall (adjusted relative risk 1.00, 95% CI 0.94-1.07) or in crude anatomical subsites among recipients of blood from precancerous donors compared with recipients of blood from non-cancerous donors. Our data provide no evidence that blood transfusions from precancerous blood donors are associated with increased risk of cancer among recipients compared with transfusions from non-cancerous donors.
    Full-text · Article · Jun 2007 · The Lancet
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    [Show abstract] [Hide abstract] ABSTRACT: Polymorphisms in glutathione-S-transferase (GST), N-acetyltransferase (NAT) 1, and CYP1A1 genes have been suggested as susceptibility factors for esophageal and gastric adenocarcinomas, but have not been consistently linked to elevated risks. In a population-based case-control study, we examined risks in relation to polymorphisms of the following genes: GSTP1; GSTM1; GSTT1; NAT1; and CYP1A1. Histologically confirmed incident cases, ages 30-79, were identified in three US locations. Population controls from the same catchment areas were frequency matched to expected age and sex distributions of esophageal and gastric cardia adenocarcinomas. DNA was extracted from buffy coat for PCR-based assays, with interpretable genotyping results obtained from 209 controls, 67 esophageal adenocarcinomas, 60 gastric cardia adenocarcinomas, and 56 noncardia gastric adenocarcinomas. Odds ratios (ORs) and 95% confidence intervals (CIs) were calculated among whites, adjusting for age, sex, and study center. In all histologic subgroups, ORs were somewhat elevated for the GSTP1 Val/Val genotype (versus Ile/Ile), although 95% CIs included 1.00. The respective ORs for esophageal, cardia, and other gastric adenocarcinomas were 1.73 (0.75-4.02), 1.46 (0.57-3.73), and 1.22 (0.48-3.09). No consistent patterns of elevated risk were associated with the null GSTM1 or GSTT1 genotypes, one or two copies of NAT110 or 11 alleles, or CYP1A1 Val/Val or Ile/Val genotypes (versus Ile/Ile). Additional research in larger samples is needed to further assess polymorphisms and their interactions with epidemiologic risk factors, particularly for esophageal adenocarcinoma, which has been increasing markedly in incidence.
    Preview · Article · Feb 2007 · Cancer Detection and Prevention
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    [Show abstract] [Hide abstract] ABSTRACT: To improve the measurement of usual dietary intake, the National Cancer Institute developed a cognitively based Diet History Questionnaire (DHQ), which has been validated against four 24-h dietary recalls (4 24-HR) for energy, macronutrients, and several vitamins and minerals. This analysis used data from The Eating at America's Table Study (EATS) to determine the validity of estimates for carotenoids and tocopherols from the DHQ. Over the course of a year, 163 participants provided 1 or 2 blood samples and completed the DHQ and 4 24-HR. For both the DHQ and the 4 24-HR, crude correlations between serum and diet were modest to strong for the provitamin A carotenoids (alpha-carotene, beta-carotene, beta-cryptoxanthin), low to modest for lycopene, and very low for lutein. The individual dietary tocopherols were weakly correlated with the serum tocopherols, but vitamin E from food and dietary supplements was strongly and positively correlated with serum alpha-tocopherol and strongly and inversely correlated with serum gamma-tocopherol for both instruments. Adjustment for energy, BMI, smoking status, serum total cholesterol, and serum triacylglycerol did not appreciably change the correlations. Using the method of triads, validity coefficients for the DHQ were comparable to the 4 24-HR and were especially strong for alpha-carotene, beta-cryptoxanthin, lutein + zeaxanthin, and total vitamin E in men and gamma-tocopherol and total vitamin E in women. In this study, there was no advantage of 2 blood samples over 1, suggesting reasonably stable ranking of individuals for these biomarkers, which is important for large epidemiologic studies that typically obtain only 1 blood sample for biomarker status.
    Full-text · Article · Jan 2007 · Journal of Nutrition
  • [Show abstract] [Hide abstract] ABSTRACT: Even with appropriate donor deferrals and advanced screening tests, the risk of disease transmission through blood transfusion cannot be completely disregarded. Efficient monitoring of possible disease transmission between blood donors and recipients should be an important component of a comprehensive haemovigilance system. We assembled the Scandinavian Donations and Transfusions (SCANDAT) database, with data on virtually all blood donors and recipients who have been registered at least once in any of the computerized local blood bank databases in Sweden and Denmark since the start of computerized registration in 1966. The records of these individuals, with their entire computerized donation and/or transfusion histories and all donor-component-recipient connections, were linked to nationwide population and health registers to attain essentially complete follow-up for up to 36 years regarding reproduction, hospital morbidity, cancer, and death. After data cleaning, the database contained 1,134,290 blood donors who contributed 15,091,280 records of donations and 1,311,079 recipients who received 11,693,844 transfusions. The data quality in the existing data sources was satisfactory. From the data obtained from local blood banks, 4.6%, 1.6%, and 6.4% of the person, donation, and transfusion records, respectively, had to be discarded after review of the legitimacy of recorded values, and comparisons with independent, external databases. It is possible to use existing computerized data, collected in routine health care, in haemovigilance systems for monitoring long-term outcome and disease concordance in blood donors and transfusion recipients.
    No preview · Article · Dec 2006 · Vox Sanguinis
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    [Show abstract] [Hide abstract] ABSTRACT: Previous studies suggest disparities in use of preventive cancer services among U.S. Hispanics are partly explained by knowledge and access factors. One area of emerging interest is uptake of genetic counseling and testing services by underserved populations. This study aims to estimate the percentage of Hispanics in five ethnic subgroups who are aware of genetic testing for inherited cancer risk, and to assess the influence of acculturation factors primarily related to language on test awareness. Weighted data from 4,313 Hispanic respondents (age >25 years) in the year 2000 National Health Interview Survey were analyzed. Overall, 20.6% of Hispanics had heard of genetic testing for cancer risk, with percentages highest among Puerto Ricans (27.3%) and lowest among Mexicans (14.3%). Completing the interview in Spanish and English [odds ratio (OR), 0.52; 95% confidence interval (95% CI), 0.35-0.78], or only Spanish (OR, 0.60; 95% CI, 0.42-0.86), was inversely associated with test awareness (reference group, only English). Having an intermediate (OR, 0.66; 95% CI, 0.48-0.90) or low (OR, 0.63; 95% CI, 0.39-1.01) level of English language preference was also inversely associated (reference, high level) whereas being born outside the United States was weakly associated (OR, 0.80; 95% CI, 0.57-1.11). Estimates were adjusted for age, education, ethnicity, parents' cancer history, health care access, and selected health behaviors and beliefs. Results of this national survey indicate that acculturation factors related to language may affect cancer genetic test awareness in Hispanics. These factors must be taken into account when informing individuals about the role of genetics in cancer risk and providing cancer genetic health services.
    Preview · Article · Apr 2006 · Cancer Epidemiology Biomarkers & Prevention