Betsy Risendal

Participation of Minorities in Cancer Research

Overall, participation rates in cancer clinical trials are very low, ranging from 3 to 20% of eligible participants. However, participation rates are especially low among the socially disadvantaged and racial/ethnic minority groups that have been historically underrepresented in clinical research. Structural factors such as study duration, treatment or intervention schedule, cost, time, followup visits, and side effects represent more of a barrier to participation among these groups compared with white, non-Hispanics. Attitudes, beliefs, perceptions, and knowledge regarding clinical research, and cultural characteristics of underrepresented minorities pose additional barriers to participation. This article focuses on the structural, cultural, and linguistic factors that affect participation in clinical cancer research for each major U.S. racial/ethnic group. Low socioeconomic status, speaking a primary language other than English, differences in communication styles, mistrust of research and the medical system, fear, embarrassment, and lack of knowledge about the origin of cancer appear to have a negative impact on clinical cancer research participation rates. Much of the information about these factors comes from studies of cancer screening because little data is available on the factors that prevent and facilitate participation of minorities in clinical cancer trials specifically. Such research is needed, and, given the heterogeneity within and between minority populations, should occur in several different geographic settings and with as many different minority subpopulations as possible.

Survivorship care planning after the Institute of Medicine recommendations: how are we faring?

IntroductionThis study evaluates the concordance of treatment summaries (TSs) and survivorship care plans (SCPs) delivered to breast cancer survivors within the LIVESTRONG™ Network of Survivorship Centers of Excellence with Institute of Medicine (IOM) recommendations and describes additional structure/process variables.MethodSeven NCI-designated comprehensive cancer centers and six community-based centers participated. TS/SCPs for 65 patients were rated against IOM recommendations using a study-derived checklist, and surveys were administered to better understand the structure and process of delivering TSs/SCPs.ResultsOn average, fewer than half of IOM content recommendations were met for TSs (M = 46%) and less than two thirds for SCPs (M = 59%). No sites achieved ≥75% overall concordance with IOM recommendations for TSs and only two of 13 met this criterion for SCPs. Content domain scores across sites varied widely, as did the number of sites addressing domain content with ≥75% concordance. Nonetheless, resources required for document preparation and delivery were substantial.DiscussionGaps in concordance with IOM recommendations exist even in dedicated survivorship centers. A substantial time burden was also noted. Further research is needed to determine which informational elements are essential, to develop and test strategies for improving efficiency and reach, and to determine if outcomes of survivorship care planning warrant the resources required in their preparation and delivery.Implications for survivorsTSs and SCPs have been recommended for all cancer survivors. Essential elements must be determined, approaches made more efficient, outcome improvements demonstrated, and cost-benefit analyses determined before survivors should expect widespread implementation of this recommendation for survivorship care.

Comparative analysis of breast cancer risk factors among Hispanic and non-Hispanic white women.

Hispanic and non‐Hispanic white (NHW) populations within the United States have different breast cancer incidence rates, yet there is limited research on how ethnic differences in the prevalence of established risk factors and their associations with breast cancer contribute to the observed differences.

Survivorship navigation outcome measures: a report from the ACS patient navigation working group on survivorship navigation.

Survivorship navigation is a relatively new concept in the field of patient navigation but an important one. This article highlights the essential functions of the survivorship navigator and defines core outcomes and measures for navigation in the survivorship period. Barriers to access to care experienced by patients during active cancer treatment can continue into the post‐treatment period, affecting quality follow‐up care for survivors. These barriers to care can be particularly acute for non‐English speakers, immigrants, the uninsured, the underinsured, and other vulnerable populations. The survivorship navigator can help reduce barriers and facilitate access to survivorship care and services through communication and information exchange for patients. Survivorship navigation may improve appropriate health care utilization through education and care coordination, potentially improving health outcomes and quality of life of survivors while reducing cost to the health care system. Survivorship navigators can also educate survivors on how to improve their overall wellness, thereby directly impacting the health of a growing population of cancer survivors. Cancer 2011;117(15 suppl):3573–82.

Dietary Intake of Folate, B-Vitamins and Methionine and Breast Cancer Risk among Hispanic and Non-Hispanic White Women

Background Low dietary folate intake is associated with several neoplasias, but reports are inconsistent for breast cancer. Additionally, the association of folate with breast cancer estrogen receptor (ER) status is not well established. Objective To determine if dietary intakes of folate, B-vitamins (B2, B6, B12) and methionine are associated with breast cancer risk and ER status in Hispanic, and non-Hispanic White women in the southwestern US. Materials and Methods Primary breast cancer cases (n = 2,325) in the 4-Corners region (Arizona, Colorado, New Mexico and Utah), diagnosed between October 1999 and May 2004, were identified through state cancer registries. Controls (n = 2,525) were frequency-matched by ethnicity and age (±5 years). Dietary intake, physical activity and other exposures were assessed using in-person interviews. Risk was assessed through multivariable and multinomial logistic regression with adjustment for relevant covariates. Result While there was no overall association with breast cancer, the highest quartile of folate intake was marginally inversely associated with ER− breast cancer (Odds Ratio (OR) = 0.50, 95%CI 0.25–1.00, p for trend = 0.07). Vitamin B12 intake was inversely associated with breast cancer also (OR = 0.73, 95%CI 0.53–1.00, p for trend = 0.06), particularly for the highest quartile of ER+ breast cancer (OR = 0.67, 95%CI 0.46–0.99, p for trend = 0.06), among NHW women (OR = 0.49, 95%CI 0.29–0.81, p for trend = 0.01) and invasive breast cancer (OR = 0.63; 95%CI: 0.42, 0.93, P trend = 0.01). Methionine intake was also inversely associated with ER+ breast cancer (OR for 4th quartile = 0.83, 95%CI 0.66–1.03, p for trend = 0.04), primarily among Hispanic women (OR = 0.71, 95%CI 0.47–1.06, and P for trend = 0.02). Conclusion Higher intake of folate is marginally associated with a lower risk for ER− breast cancer, and higher intakes of vitamin B-12 and methionine are marginally associated with a lower risk of ER+ breast cancer.

Dissemination of patient navigation programs across the united states

OBJECTIVE To use diffusion and dissemination frameworks to describe how indicators of economic and health care disparity affect the location and type of patient navigation programs. METHODS A cross-sectional national Web-based survey conducted during 2009-2010 with support from 65 separate national and regional stakeholder organizations. PARTICIPANTS A total of 1116 self-identified patient navigators across the United States. MAIN OUTCOME MEASURE The location and characteristics of patient navigation programs according to economic and health care disparity indicators. RESULTS Patient navigation programs appear to be geographically dispersed across the United States. Program differences were observed in navigator type, population served, and setting by poverty level. Programs in high-poverty versus low-poverty areas were more likely to use lay navigators (P < .001) and to be located in community health centers and agencies with religious affiliations (50.6 vs 36.4%, and 21.5% vs 16.7%. respectively; P ≤ 0.01). CONCLUSION(S) Results suggest that navigation programs have spread beyond initial target inception areas and also serve as a potentially important resource in communities with higher levels of poverty and/or relatively low access to care. In addition, while nurse navigators have emerged as a significant component of the patient navigation workforce, lay health navigators serve a vital role in underserved communities. Other factors from dissemination frameworks may influence the spread of navigation and provide useful insights to support the dissemination of programs to areas of high need.

Dissemination and Translation: A Frontier for Cancer Survivorship Research

As the field of survivorship research grows, the need for translation is imperative to expand new knowledge into arenas that directly impact survivors. This commentary seeks to encourage research focused on dissemination and translation of survivorship interventions and programs, including practice-based research. We overview diffusion, dissemination and translation in the context of cancer survivorship and present the RE-AIM and Knowledge to Action frameworks as approaches that can be used to expand research into communities. Many academic, governmental, and community-based organizations focus on cancer survivor. Future survivorship research should contribute to harmonizing these assets to identify effective interventions, maximize their reach and adoption, and integrate promising practices into routine care. Cancer Epidemiol Biomarkers Prev; 20(10); 2093–8. ©2011 AACR.

A systematic review of special events to promote breast, cervical and colorectal cancer screening in the United States

BackgroundSpecial events are common community-based strategies for health promotion. This paper presents findings from a systematic literature review on the impact of special events to promote breast, cervical or colorectal cancer education and screening.MethodsArticles in English that focused on special events involving breast, cervical, and/or colorectal cancer conducted in the U.S. and published between January 1990 and December 2011 were identified from seven databases: Ovid, Web of Science, CINAHL, PsycINFO, Sociological Abstract, Cochrane Libraries, and EconLit. Study inclusion and data extraction were independently validated by two researchers.ResultsOf the 20 articles selected for screening out of 1,409, ten articles on special events reported outcome data. Five types of special events were found: health fairs, parties, cultural events, special days, and plays. Many focused on breast cancer only, or in combination with other cancers. Reach ranged from 50–1732 participants. All special events used at least one evidence-based strategy suggested by the Community Guide to Preventive Services, such as small media, one-on-one education, and reducing structural barriers. For cancer screening as an outcome of the events, mammography screening rates ranged from 4.8% to 88%, Pap testing was 3.9%, and clinical breast exams ranged from 9.1% to 100%. For colorectal screening, FOBT ranged from 29.4% to 76%, and sigmoidoscopy was 100% at one event. Outcome measures included intentions to get screened, scheduled appointments, uptake of clinical exams, and participation in cancer screening.ConclusionsSpecial events found in the review varied and used evidence-based strategies. Screening data suggest that some special events can lead to increases in cancer screening, especially if they provide onsite screening services. However, there is insufficient evidence to demonstrate that special events are effective in increasing cancer screening. The heterogeneity of populations served, event activities, outcome variables assessed, and the reliance on self-report to measure screening limit conclusions. This study highlights the need for further research to determine the effectiveness of special events to increase cancer screening.

Differences in Estrogen Receptor Subtype According to Family History of Breast Cancer among Hispanic, but not Non-Hispanic White Women

Background: Pathologic differences have been reported among breast tumors when comparing ethnic populations. Limited research has been done to evaluate the ethnic-specific relationships between breast cancer risk factors and the pathologic features of breast tumors. Methods: Given that genetic variation may contribute to ethnic-related etiologic differences in breast cancer, we hypothesized that tumor characteristics differ according to family history of breast cancer among Hispanic and non-Hispanic White (NHW) women. Logistic regression models were used to compute odds ratios (OR) and 95% confidence intervals (95% CI) to assess this relationship in the population-based, case-control 4-Corners Breast Cancer Study (1,537 cases and 2,452 controls). Results: Among Hispanic women, having a family history was associated with a 2.7-fold increased risk of estrogen receptor (ER) negative (95% CI, 1.59-4.44), but not ER positive tumors (OR, 1.04; 95% CI, 0.71-1.54) when compared with women without breast cancer. In contrast, there was an increased risk for ER positive (OR, 1.89; 95% CI, 1.50-2.38) and a marginally significant increased risk for ER negative tumors (OR, 1.41; 95% CI, 0.92-2.17) among NHW women. When comparing tumor characteristics among invasive cases, those with a family history also had a significantly higher proportion of ER negative tumors among Hispanics (39.2% versus 25.8%; P = 0.02), but not among NHWs (16.3% versus 21.1%; P = 0.13). Conclusions: These results may reflect ethnic-specific predisposing genetic factors that promote the development of specific breast tumor subtypes, and emphasize the importance of evaluating the relationship between breast cancer risk factors and breast tumor subtypes among different ethnic populations. (Cancer Epidemiol Biomarkers Prev 2008;17(10):2700–6)

Cancer prevention among urban Southwestern American Indian women: Comparison to selected Year 2000 national health objectives

PURPOSE The health issues which have historically faced American Indians are related to infectious disease, but today many chronic diseases play a large role in the health status of this special population. For example, existing data indicate that American Indians have the poorest cancer survival of any group in the U.S. (34% vs. 50% for U.S. Whites). Regular participation in cancer screening and lifestyle factors such as smoking, diet, and alcohol have been found to significantly contribute to cancer risk. However, available information about these behaviors is sparse and suffers from limitations. The purpose of this study was to assess the prevalence of cancer risk behaviors and provider recommendation for cancer screening among urban American Indian women. METHODS A random household cross-sectional survey was administered to 519 adult American Indian women in Phoenix, Arizona. Smoking and weight status, alcohol consumption, physical activity, and provider referral were assessed by self-report. RESULTS The results indicate that weight (69.6% were overweight) and excessive alcohol consumption (12.1 reported chronic drinking) were significant health issues in this population. The prevalence of provider referral for smoking cessation (14.9% among ever smokers) and breast as well as cervical cancer screening (30.1% and 55.5%, respectively) were below the 75% level set forth in the Year 2000 Goals. CONCLUSIONS The results of this study suggest that increased cancer prevention and control efforts are needed in this special population to address the link between diet, weight, and long-term disease prevention.