Efficient identification and referral of low-income women at high risk for hereditary breast cancer: a practice-based approach.

BACKGROUND: Identification of low-income women with the rare but serious risk of hereditary cancer and their referral to appropriate services presents an important public health challenge. We report the results of formative research to reach thousands of women for efficient identification of those at high risk and expedient access to free genetic services. External validity is maximized by emphasizing intervention fit with the two end-user organizations who must connect to make this possible. This study phase informed the design of a subsequent randomized controlled trial. METHODS: We conducted a randomized controlled pilot study (n = 38) to compare two intervention models for feasibility and impact. The main outcome was receipt of genetic counseling during a two-month intervention period. Model 1 was based on the usual outcall protocol of an academic hospital genetic risk program, and Model 2 drew on the screening and referral procedures of a statewide toll-free phone line through which large numbers of high-risk women can be identified. In Model 1, the risk program proactively calls patients to schedule genetic counseling; for Model 2, women are notified of their eligibility for counseling and make the call themselves. We also developed and pretested a family history screener for administration by phone to identify women appropriate for genetic counseling. RESULTS: There was no statistically significant difference in receipt of genetic counseling between women randomized to Model 1 (3/18) compared with Model 2 (3/20) during the intervention period. However, when unresponsive women in Model 2 were called after 2 months, 7 more obtained counseling; 4 women from Model 1 were also counseled after the intervention. Thus, the intervention model that closely aligned with the risk program's outcall to high-risk women was found to be feasible and brought more low-income women to free genetic counseling. Our screener was easy to administer by phone and appeared to identify high-risk callers effectively. The model and screener are now in use in the main trial to test the effectiveness of this screening and referral intervention. A validation analysis of the screener is also underway. CONCLUSION: Identification of intervention strategies and tools, and their systematic comparison for impact and efficiency in the context where they will ultimately be used are critical elements of practice-based research.

Does willingness to pay vary by race/ethnicity? An analysis using mammography among low-income women.

As part of a population-based intervention to improve periodic mammogram screening, we examined WTP for mammography in five ethnic groups. Through random digit dialing, we contacted households in low-income census tracts of Alameda County, California (San Francisco Bay area). Women who met the ethnicity, age and cancer-free eligibility criteria were invited to participate. For the baseline assessment, women were surveyed over the phone in their preferred language. Of the 1465 surveyed women, 499 identified themselves as African-American, 199 were Chinese, 167 were Filipino, 300 were Latina, and 300 were non-Hispanic white. Bivariate and multivariate analysis showed that WTP varied significantly by ethnicity (P<0.05). We also found that when Filipino and Chinese women had a female relative with breast cancer, they were willing to pay less money for a mammogram. African-American, Latino, and non-Hispanic white women, however, were willing to pay more money for a mammogram if a female relative had had breast cancer. This ethnic difference, when there is a familial link to breast cancer, needs further study as it has implication for genetic testing. Nevertheless, WTP studies that do not account for ethnic differences may be overstating net benefits to society.

Abnormal Pap smear follow-up in a high-risk population.

Low-income women are at high risk of developing cervical cancer attributable not only to the higher prevalence of risk factors in this population but also to the lack of timely follow-up of abnormal Pap smears. This study evaluates the efficacy of an aggressive follow-up strategy. Women with abnormal Pap smear results after screening in a public hospital emergency department were randomly assigned to follow-up either by a case-managed approach using computerized tracking and universal colposcopy or by traditional care. The main outcome was the proportion of women receiving follow-up in 6 months. A secondary outcome was the proportion of women receiving follow-up by 6 months and diagnostic resolution in 18 months. Of 54 women in the intervention group, 65% kept at least one follow-up appointment in 6 months compared with 41% of the 54 women in the control group (P = 0.012). Half the women in the intervention group versus 19% of women in the control group had follow-up in 6 months and diagnostic resolution in 18 months (P = 0.001). After adjusting for age, initial Pap smear result, and race/ethnicity, the odds of having follow-up in 6 months were four times greater for women in the intervention group (odds ratio = 4.0; 95% confidence interval, 1.6-9.7), and the odds of having both follow-up in 6 months and diagnostic resolution in 18 months were more than six times greater (odds ratio = 6.5; 95% confidence interval, 2.4-17.8). This study demonstrates that an aggressive follow-up strategy significantly improves the rate of both initial follow-up and diagnostic resolution of abnormal Pap smears among low-income women with atypical squamous cells of undetermined significance and atypical glandular cells of undetermined significance when compared with traditional care.

Community-based cancer screening for underserved women: design and baseline findings from the Breast and Cervical Cancer Intervention Study.

BACKGROUND: Underutilization of breast and cervical cancer screening has been observed in many ethnic groups and underserved populations. Effective community-based interventions are needed to eliminate disparities in screening rates and thus to improve prospects for survival. METHODS: The Breast and Cervical Cancer Intervention Study was a controlled trial of three interventions in the San Francisco Bay Area from 1993 to 1996: (1) community-based lay health worker outreach; (2) clinic-based provider training and reminder system; and (3) patient navigator for follow-up of abnormal screening results. Study design and a description of the interventions are reported along with baseline results of a household survey conducted in four languages among 1599 women, aged 40-75. RESULTS: Seventy-six percent of women ages 40 and over had had at least one mammogram, and most had had a clinical breast examination (88%) and Pap smear (89%). Rates were significantly lower for non-English-speaking Latinas and Chinese women (56 and 32%, respectively, for mammography), and maintenance screening (three mammograms in the past 5 years) varied from 7% (non-English-speaking Chinese) to 53% (Blacks). Pap smear screening in the past 3 years was low among non-English-speaking Latinas (72%) and markedly lower among non-English-speaking Chinese women (24%). The strongest predictors of screening behavior were having private health insurance and frequent use of medical services. Having a regular clinic and speaking English were also important. Race/ethnicity, education, household income, and employment status were, overall, not significant predictors of screening behavior. CONCLUSIONS: These baseline results support the importance of cancer screening interventions targeted to persons of foreign origin, particularly those less acculturated.

Quality of data in multiethnic health surveys.

OBJECTIVE: There has been insufficient research on the influence of ethno-cultural and language differences in public health surveys. Using data from three independent studies, the authors examine methods to assess data quality and to identify causes of problematic survey questions. METHODS: Qualitative and quantitative methods were used in this exploratory study, including secondary analyses of data from three baseline surveys (conducted in English, Spanish, Cantonese, Mandarin, and Vietnamese). Collection of additional data included interviews with investigators and interviewers; observations of item development; focus groups; think-aloud interviews; a test-retest assessment survey; and a pilot test of alternatively worded questions. RESULTS: The authors identify underlying causes for the 12 most problematic variables in three multiethnic surveys and describe them in terms of ethnic differences in reliability, validity, and cognitive processes (interpretation, memory retrieval, judgment formation, and response editing), and differences with regard to cultural appropriateness and translation problems. CONCLUSIONS: Multiple complex elements affect measurement in a multiethnic survey, many of which are neither readily observed nor understood through standard tests of data quality. Multiethnic survey questions are best evaluated using a variety of quantitative and qualitative methods that reveal different types and causes of problems.

Willingness to pay for mammography: item development and testing among five ethnic groups.

The goal of this study was to develop a willingness to pay (WTP) question for mammography that is appropriate for low income, ethnically-diverse women. Through qualitative research with 50 low income women of five ethnic groups we developed both a WTP question and a willingness to travel question (WTT). After being refined through interviews with 41 women, these questions were pilot tested on a random sample of 52 low income, ethnically-diverse women in the San Francisco area. Results show that the concepts underlying WTP and WTT were culturally appropriate to the five ethnicities in this study. Analyses generally confirm the validity of the WTP and WTT questions. As expected, WTP was associated with household income, perceived risk of cancer, and knowledge that one needs a mammogram even after a clinical breast examination. Despite the small samples, WTP varied among the ethnic groups. Additionally, WTT was moderately correlated with the natural log of WTP (r = 0.58, P < 0.001). These questions are now in use in a larger clinical trial and future analyses will explore willingness to pay and willingness to travel within and across the ethnic groups.

Unsolved problems in early breast cancer detection: focus on the underserved.

In the last decade, numerous research and programmatic efforts have attempted to improve cancer screening practices among women from diverse race/ethnic backgrounds on the assumption that observed differences in breast cancer survival were largely due to differences in early detection practices. Recent data from the 1992 National Health Interview Survey and a 1992 survey in San Francisco Bay Area multiethnic communities indicate that rates of self-reported breast cancer screening tests among African American, Hispanic, and white women no longer differ significantly. However, there are large, persistent socioeconomic differences as reflected in educational and income levels, the recency of immigration, and English language proficiency. This emphasizes the continuing need for interventions tailored specifically for the underserved, with the racial, ethnic, and cultural composition of the intended audience informing educational messages and strategies. However, effective research interventions are complex and costly throughout the spectrum of outreach, inreach, and follow-up. Thus the generalizability of these strategies to under-founded providers and agencies in low-income communities may be limited. Therefore, as ongoing research continues to refine strategies, the application of effective community-based intervention should seek out potential partnerships with programs that provide the critical access to services. Cancer control scientists are well positioned to advocate for community-based infrastructures that facilitate translation of research into practice.

Mass media in health promotion: a compilation of expert opinion.

This paper reports on an open-ended survey of experts in the field of mass media and health promotion. The study was designed to read between the lines of published reports to identify new directions in the use of mass media in health promotion; to identify areas of consensus and controversy in the design and use of such campaigns; and to compare expert opinion with the literature. Survey responses are synthesized and reported in terms of (1) ingredients for successful mass media programs relative to program purpose, structure, and methods; and (2) obstacles to effective use of mass media for health promotion, including information overload and inconsistency, demand characteristics of the target behavior, dissemination, and unsupportive social milieus. Conclusions are presented as guidelines for pursuit of the optimal program and principles to guide further inquiry.

Psycho-social factors and the technologies of work.

This paper examines the probable association between use of complex technologies in the work setting and psycho-social factors believed to impact upon human health. The analysis is set within two long-standing philosophical perspectives on technology, one which holds that technology controls human choice and action, and the other which sees technology as a useful tool for extending human capabilities. Research evidence linking technologies of work to health are reviewed. On the basis of this literature, the authors conclude that, in general, among blue collar and clerical workers, technology is often a controlling element, to the detriment of health; but among professionals and managers, technology can be an aid to work and may therefore facilitate positive health. Strategies are offered toward the prevention and detection of, and intervention into work environments which, through the use of high technology, may pose a threat to health.