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Informed decision making: what is its role in cancer screening?

Interest in informed decision making (IDM) has grown in recent years. Greater patient involvement in decision making is consistent with recommendations to improve health care quality. This report provides an overview of IDM; clarifies the differences between IDM, shared decision making (SDM), and informed consent; and reviews the evidence to date about IDM for cancer screening. The authors also make recommendations for research. We define IDM as occurring when an individual understands the disease or condition being addressed and comprehends what the clinical service involves, including its benefits, risks, limitations, alternatives, and uncertainties; has considered his or her preferences and makes a decision consistent with them; and believes he or she has participated in decision making at the level desired. IDM interventions are used to facilitate informed decisions. The authors reviewed the evidence to date for IDM and cancer screening based primarily on published meta-analyses and a recent report for the Centers for Disease Control and Prevention's Guide to Community Preventive Services. IDM and SDM interventions, such as decision aids, result in improved knowledge, beliefs, risk perceptions, and combinations of these. Little or no evidence exists, however, regarding whether these interventions result in 1) participation in decision making at a level consistent with patient preferences or 2) effects on patient satisfaction with the decision-making process. These variables generally either were not assessed or were not reported in the articles reviewed. Results of interventions on uptake of screening were variable. After exposure to IDM/SDM interventions, most studies showed small decreases in prostate cancer screening, whereas four studies on breast and colorectal cancer screening showed small increases. Few data are available by which to evaluate current practices in cancer screening IDM. Patient participation in IDM should be facilitated for those who prefer it. More research is needed to assess the benefits of IDM/SDM interventions and to tailor interventions to individuals who are most likely to desire and benefit from them. There are many system barriers to IDM/SDM and few tools. More work is needed in this area as well. In addition, research is needed to learn how to incorporate IDM into ongoing clinical practice and to determine whether there are unintended negative consequences of IDM.

Community Health Services↗

Cancer screening in homeless women: attitudes and behaviors.

Little is known about the use of cancer-screening services in homeless women and their attitudes about early detection programs. Face-to-face interviews were conducted with homeless women in San Francisco to determine rates of clinical breast exams, mammograms, and Pap smears. A total of 105 women were randomly selected from two homeless shelters. By self-report, 51 percent were current on clinical breast exams, 47 percent on mammograms, and 54 percent on Pap smears. These women had very positive attitudes toward receiving cancer-screening exams. In multivariate analyses, discussion about cancer prevention with a health care provider predicted current clinical breast exams and mammograms. More medical visits predicted being current on mammograms and Pap smears. Although homeless women represent a unique group of the urban poor, they are accessing cancer-screening exams at rates comparable to the general population.

Adult↗

[Cost of breast cancer screening].

The adoption in France of a national breast cancer screening policy will depend in part on economic factors. These include the investments and costs of screening and the cost-effectiveness of screening as compared to other health interventions. There exist few economic data on breast cancer screening in France. Existing studies have estimated the cost of screening at 374 FF per woman screened, however they provide no indication of the cost-effectiveness of screening. The application of cost-effectiveness ratios obtained in other countries is difficult given the strong presence of spontaneous screening which is unique in France. Spontaneous screening may undermine the marginal gain in life expectancy expected from organized screening, however it does not offer the quality of organized screening in terms of systematic double reading and quality assurance of mammographic units. Precise and reliable data on the costs and effectiveness associated with both these forms of screening must be collected before reaching any conclusions on cost-effectiveness. These data will allow for the development of a coherent and equitable policy on screening in France which is justified both in economic terms and in terms of public health.

Breast Neoplasms↗

Worry about ovarian cancer risk and use of ovarian cancer screening by women at risk for ovarian cancer.

OBJECTIVE: This study examined reports of perceived risk of ovarian cancer, worry, and screening use in a large sample of women. While screening for asymptomatic women is not generally recommended, in 1994 a consensus conference concluded that women with multiple affected relatives are at high risk for ovarian cancer and should be encouraged to participate in screening. The consensus report also suggested that women with a single affected first-degree relative are at elevated risk and while these women were not encouraged to get screening it was suggested that they may choose to pursue screening outside of a randomized trial [NIH Consensus Conference. JAMA 1995;273(6) 491-7]. METHODS: A total of 3257 women participated in this research by completing a mailed survey on ovarian cancer risk, worry, and use of screening. One hundred forty-two of these women were at high risk for this disease due to a strong family history. An additional 144 women were at elevated risk due to a single first-degree affected relative with ovarian cancer. RESULTS: Family history did predict perceived risk, difficulties due to worry, and use of ovarian cancer screening. However, the group of women most likely to report high levels of perceived risk and to have received screening for ovarian cancer were women with a single affected relative rather than those at high risk, for whom screening is recommended. CONCLUSIONS: These results suggest that many women need additional education about ovarian cancer risk. Most women overestimated their risk for this disease. Some average-risk women get screening although it is not recommended outside of randomized trials, and a significant percentage of women at high risk fail to get recommended screening.

Adolescent↗

Flexible sigmoidoscopy in the PLCO cancer screening trial: results from the baseline screening examination of a randomized trial.

BACKGROUND: The Prostate, Lung, Colorectal and Ovarian (PLCO) cancer screening trial is a randomized clinical trial to test the effectiveness of cancer screening, including the effect of flexible sigmoidoscopy screening on colorectal cancer mortality. Here we report findings from the baseline screening flexible sigmoidoscopy examination. METHODS: Analyses included 77,465 men and women aged 55-74 years who were enrolled at 10 screening centers. The trial administered baseline risk factor questionnaires, offered 60-cm flexible sigmoidoscopy examinations, referred patients with screen-detected colorectal polyps or masses to personal physicians, and tracked subjects with polyps or masses to determine results from diagnostic follow-up. Cochran-Mantel-Haenszel statistics and logistic regression were used to test for differences in proportions according to sex and age. RESULTS: A total of 64 658 subjects (83.5%) underwent screening flexible sigmoidoscopy, and at least one polyp or mass was identified in 15,150 subjects (23.4%). Of these, 74.2% received follow-up lower endoscopic procedures. Follow-up lower endoscopy was more frequent in subjects with at least one larger (> or = 0.5 cm) polyp or mass (86.0% [95% confidence interval {CI} = 84.6% to 87.4%] and 81.0% [95% CI = 79.8% to 82.2%] in women and men, respectively) than in those with a smaller (< 0.5 cm) polyp or mass (69.1% [95% CI = 67.5% to 70.6%] and 65.4% [95% CI = 64.1% to 66.7%] in women and men, respectively). The yields per 1000 screened, depending on 5-year age group, were as follows: for colorectal cancer, 1.1-2.5 in women and 2.4-5.6 in men; for advanced adenoma, 18.0-30.4 in women and 36.1-49.1 in men; and for colorectal cancer or any adenoma, 50.6-79.6 in women and 101.9-128.6 in men. Approximately 77% (130/169) of the colorectal adenocarcinoma patients were stage I or II at diagnosis. CONCLUSIONS: Acceptance of screening flexible sigmoidoscopy was high. Diagnostic follow-up varied according to polyp size, yet cancer or adenoma detection rates met expectations.

Adenoma↗

Including the quality-of-life effects in the evaluation of prostate cancer screening: expert opinions revisited?

OBJECTIVE: To apply the general empirical framework for estimating utilities in cost-utility analysis (CUA) of population-based prostate cancer screening, including an assessment of empirical health status with a classifying measure (e.g. the EQ-5D) and linking these descriptions to utility estimates using the standard preference-based algorithm, combining them with the appropriate duration into quality-adjusted life years, and sensitivity analysis. MATERIALS AND METHODS: Empirical studies to describe and value the health status effects of prostate cancer screening have been ongoing within the Rotterdam centre of the European Randomised Study on Screening for Prostate Cancer since 1995. The results of these studies, including the screening, the primary treatment phase and advanced disease, will be used in estimating utilities for cost-utility analysis. RESULTS: Estimation of cost-utility of population-based prostate cancer screening with the results of the three empirical health status studies yielded partly counterintuitive results, underestimating the unfavourable health status effects that are inevitably associated with prostate cancer screening. This may be caused by other than health effects of the screening itself ('process effects') and adaptive changes in perception of their situation in patients after curative primary treatment ('response shift'), among other elements. CONCLUSIONS: These results prompted us to reconsider the suitability of the general framework of CUA for screening programmes. Possible directions for solutions are indicated.

Aged↗

The importance of physician communication on breast cancer screening of older women.

BACKGROUND: Breast cancer screening rates, especially for mammography, continue to lag for older women, particularly for women older than 65 years. METHODS: We investigated the associations of key variables with reported rates of mammography and clinical breast examination in a sample of 972 women older than 50 years; 724 of them were older than 65 years. They were surveyed in late 1990 through 30-minute bilingual telephone interviews. RESULTS: Although it was hypothesized that race, age, health status, and physician-patient communication variables would influence utilization rates, only the communication variables (and two access variables) significantly predicted a recent mammogram or clinical breast examination. In particular, the style of the communication--the patient's report of the physician's enthusiasm for mammography when it was discussed with women at the office visit--influenced the women's screening behavior significantly. Women who perceived that their physicians had some enthusiasm for mammography were more than four and a half times more likely than women whose physicians had no or little enthusiasm for mammography to have had one within the previous year. Other findings were that about half of the Los Angeles, Calif, women in this study reported a recent mammogram, an increase from the one third who reported one in the previous survey of 1988; a decline in screening was not reported until after age 75 years. About a quarter of the study women, on the other hand, had never been screened despite the long-standing recommendation for regular screening of women older than 50 years and the risk of breast cancer increasing with age. Surprisingly, women at higher risk of breast cancer were not being screened any more systematically than women at lower risk. CONCLUSION: We conclude that improved physician-patient communication skills could be a highly effective and easy-to-learn strategy to increase overall screening rates.

Age Factors↗

Flexible sigmoidoscopy training and its impact on colorectal cancer screening by primary care physicians.

BACKGROUND: Colorectal cancer is an ideal disease for prevention with screening programs. Efforts to increase compliance with screening recommendations have included training primary care physicians to perform flexible sigmoidoscopy. OBJECTIVE: To assess the impact of flexible sigmoidoscopy training on compliance with current screening recommendations. METHODS: We performed a cross-sectional study of 232 patients cared for by physicians in a primary care network. MAIN OUTCOME MEASURES: Rates of screening for colorectal cancer and rates of undergoing flexible sigmoidoscopy were compared across patient groups according to the physician's training and whether the physician performs flexible sigmoidoscopy in his or her practice. RESULTS: Among 217 patients included in the analysis, 122 (56%) were cared for by physicians who were trained in flexible sigmoidoscopy, of whom 79 (36%) were cared for by physicians who perform flexible sigmoidoscopy in their practice. Patients cared for by physicians trained in flexible sigmoidoscopy were not significantly more likely to receive any colorectal cancer screening than were patients cared for by physicians not trained in flexible sigmoidoscopy (odds ratio, 1.16; 95% confidence interval, 0.67-2.01). However, patients cared for by physicians who perform flexible sigmoidoscopy in their practice were more likely to have undergone any colorectal cancer screening (odds ratio, 1.73; 95% confidence interval, 1.02-2.95) and flexible sigmoidoscopy (odds ratio, 2.69; 95% confidence interval, 1.14-6.36). CONCLUSION: Performance of flexible sigmoidoscopy by primary care physicians has the potential to increase the rate of colorectal cancer screening with flexible sigmoidoscopy.

Aged↗

Statistical issues of quality control in organised breast cancer screening.

BACKGROUND: European guidelines for breast-cancer screening recommend an integrated approach of mammography screening with subsequent assessment and biopsy, if required, in one screening unit under permanent quality control, for which target values are released. Although the calculation of the respective rates (e.g. for participation, assessment, biopsy, or cancer detection) appears trivial, the statistical assessment of their compatibility with the target values is less obvious. This is especially true if subjects with a positive diagnostic result leave the screening-assessment chain prematurely, and information about further diagnostic results outside the organised screening is lacking. METHOD: Statistical models for the basic situation, in which complete information about the screening and assessment outcome is available, as well as for when information is incomplete, are presented. The statistical methods for obtaining the confidence limits, statistical tests and sample sizes needed to obtain a desired power of tests for the process parameters of interest are also given. RESULTS: The sample-size calculations indicate that large numbers of enrolled subjects are required to obtain reasonably narrow confidence limits, and that incomplete information about the outcome of diagnostic procedures among screening positives considerably worsens the feasibility of quality control. CONCLUSIONS: Although the methodology is specified for breast-cancer screening, it should be adaptable easily to other screening issues.

Breast Neoplasms↗

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.

Adult↗

A collaborative approach to cervical cancer screening.

OBJECTIVE: The main objective of this project was to evaluate a collaborative nurse and general practitioner approach to improve screening for cervical cancer. DESIGN: Multiple group time series design. SETTING: Six postal areas in the Hunter Valley of New South Wales, Australia, chosen as intervention sites because of very low Pap test rates compared with the rest of NSW (fewer than 50% of women screened). Six regions of similar size and with similar baseline screening levels were selected as comparison sites. SUBJECTS: All women selected in the resident postal areas. INTERVENTIONS: Women's health nurses worked in collaboration with general practitioners within the communities selected from within the Hunter area to promote and provide screening for cervical cancer. MAIN OUTCOME MEASURES: Qualitative information on initial expectations and impressions of the collaborative processes were collected at the start of the project period. Process data on client characteristics and Pap test results were obtained from minimum data collections; client satisfaction was assessed from client surveys. Outcome data on the increase in the number of women in each community who were screened for cervical cancer were obtained from Health Insurance Commission claims for screening Pap tests (and from nurses' records where Pap tests were examined under block funding arrangements). RESULTS: This project showed that nurses and general practitioners can collaborate to provide appropriate and highly acceptable cervical cancer screening services for women. Many of the women screened by the nurses were in the high risk age range for cervical cancer (40 years and older) and had only basic education levels, thus representing women who are most likely to have poor screening rates. Further, 33.1% of the women screened had not had a Pap test in the past four years or had never been screened. The number of women having a Pap test during the first six months of the project, compared with the number expected from preintervention patterns, was significantly greater in four intervention areas (P < 0.01). No corresponding increase was seen in comparison areas with similar screening rates at baseline. CONCLUSIONS: There is great potential for nurses to work in collaboration with general practitioners to improve the availability and coverage of community cervical cancer screening programmes.

Australia↗

Cancer screening by primary care physicians. Can we explain the differences?

BACKGROUND: Physicians perform cancer screening tests less often than recommended. METHODS: Forty primary care physicians were surveyed to assess their knowledge, attitudes, and experiences regarding cancer and cancer screening, and patients' medical records were reviewed to measure physicians' screening rates. RESULTS: Over 80% of physicians believed doctors should urge screening. On average, 23% of their patient visits were scheduled primarily for preventive care interventions. Screening performance scores expressed the percentage of compliance with the American Cancer Society's recommendations and demonstrated the low levels of compliance for six out of seven tests; however, there was substantial variance in performance among physicians. The best predictors of screening performance were (1) the percentage of visits scheduled primarily for prevention (mammography, and pelvic and breast examinations [P less than .05]); and (2) the number of medical journals read regularly (stool occult blood test [P less than .01], sigmoidoscopy [P less than .01], and Papanicolaou smear [P less than .02]). Also, female physicians performed more Papanicolaou smears (P less than .05) and scheduled more visits for preventive care (P less than .001). CONCLUSIONS: A small group of predictors explain large portions of the variance in cancer screening performance.

Adult↗

Immunohistochemical and other features of breast carcinomas presenting clinically compared with those detected by cancer screening.

Features of 111 mammary carcinomas derived from breast cancer screening were compared with those of 69 carcinomas presenting 'clinically'. Screen detected cancers were smaller, had less likelihood of nodal metastases, included a higher proportion of in situ tumours and if invasive, tended to be of lower grade. Using immunohistochemical methods, the expression of c-erbB-2 oncoprotein, epidermal growth factor receptor (EGFR) and cathepsin D were compared in the two groups. A similar proportion of screened and unscreened tumours expressed c-erbB-2 oncoprotein and EGFR but expression of the oestrogen regulated protein cathepsin D was significantly more frequent in the screened group (P less than 0.05). Although a relatively small series, the results suggest a biological difference between 'screened' and 'clinical' tumours.

Breast Neoplasms↗

Principles of cancer screening.

Screening for cancer is an important aspect of cancer prevention and treatment. The science of screening is based on epidemiologic principles that are central to understanding the potential risks and benefits of a screening program. Screening is best applied to those conditions that are relatively common and have an important impact on quality of life and for which acceptable tests and treatments are available and affordable.

Bias↗

ACOG practice bulletin. Clinical management guidelines for obstetrician-gynecologists. Number 42, April 2003. Breast cancer screening.

Early detection of breast cancer has been shown to decrease the mortality rate (1). Technology continues to evolve to improve the accuracy of detection. In addition, the process of individual risk assessment is evolving, and new factors that affect risk are being identified. The purpose of this document is to clarify the rationale for current breast cancer screening guidelines and evaluate the evidence regarding screening techniques. It also focuses on mammography and other detection techniques as screening tools to identify nonpalpable lesions; the use of mammography for diagnostic purposes when a lesion is palpated is addressed briefly.

Adult↗

Current and future trends in colorectal cancer screening.

Current modalities for colorectal cancer screening include fecal occult-blood testing, flexible sigmoidoscopy, colonoscopy, and double-contrast barium enema. Among these, colonoscopy is becoming the dominant modality, in light of its efficacy and continuing technical refinements. Emerging technologies, such as stool DNA tests and virtual colonoscopy, hold promise for the future but cannot be recommended for screening at present.

Barium Sulfate↗

[Breast cancer screening].

Since 1989, several breast cancer screening mammography programs have been established. The purpose of this chapter is to provide the history and the main results of the previous programs. Furthermore, special attention is given to the new rules established in 2001 with emphasis of the general principles as well as the ethical principles of breast screening.

Aged↗

Disparities in breast cancer screening: is it ethical?

Breast cancer incidence and mortality rise dramatically as women get older. Approximately 48% of newly diagnosed breast cancers occur in women 65 and over, while nearly 57% of the breast cancer deaths occur in these same women. A number of studies have found that elderly women are at increased risk for being diagnosed with advanced-stage breast cancer; nevertheless, it appears that elderly women do not have more poor prognostic factors that are associated with early relapse or short survival than younger women. Considering the fact that the population is aging and the increased incidence and mortality of breast cancer in the elderly, it is important to determine what can be done to reduce breast cancer mortality in the older segments of the population. Breast cancer screening with clinical breast exam and mammography, by leading to earlier diagnosis and therapy, improves the prognosis for survival. Nevertheless, data from the 1992 US National Health Interview Survey revealed that about 27% of women 65 and over had never even had a single mammogram. Of those who did have a mammogram, fewer than two-thirds had it within one year prior to the survey. The data for clinical breast exam were less discouraging, but nearly 20% of these women had never had an exam. From an ethical perspective, women in their mid-70s have an average of about 12 years of life remaining, and should be given every opportunity to live out these years in good health.

Age Distribution↗