Treatment decisions for localized prostate cancer: a concept mapping approach.

OBJECTIVE: Few decision aids emphasize active surveillance (AS) for localized prostate cancer. Concept mapping was used to produce a conceptual framework incorporating AS and treatment. METHODS: Fifty-four statements about what men need to make a decision for localized prostate cancer were derived from focus groups with African American, Latino and white men previously screened for prostate cancer and partners (n = 80). In the second phase, 89 participants sorted and rated the importance of statements. RESULTS: An eight cluster map was produced for the overall sample. Clusters were labelled Doctor-patient exchange, Big picture comparisons, Weighing the options, Seeking and using information, Spirituality and inner strength, Related to active treatment, Side-effects and Family concerns. A major division was between medical and home-based clusters. Ethnic groups and genders had similar sorting, but some variation in importance. Latinos rated Big picture comparisons as less important. African Americans saw Spirituality and inner strength most important, followed by Latinos, then whites. Ethnic- and gender-specific concept maps were not analysed because of high similarity in their sorting patterns. CONCLUSIONS: We identified a conceptual framework for management of early-stage prostate cancer that included coverage of AS. Eliciting the conceptual framework is an important step in constructing decision aids which will address gaps related to AS.

Designing Normative Messages About Active Surveillance for Men With Localized Prostate Cancer.

Active surveillance is increasingly recognized as a reasonable option for men with low-risk, localized prostate cancer, yet few men who might benefit from conservative management receive it. The authors examined the acceptability of normative messages about active surveillance as a management option for patients with low-risk prostate cancer. Men with a diagnosis of localized prostate cancer who were recruited through prostate cancer support organizations completed a web-based survey (N = 331). They rated messages about active surveillance for believability, accuracy, and importance for men to hear when making treatment decisions. The message "You don't have to panic … you have time to think about your options" was perceived as believable, accurate, and important by more than 80% of the survivors. In contrast, messages about trust in the active surveillance protocol and "knowing in plenty of time" if treatment is needed were rated as accurate by only about 36% of respondents. For active surveillance to be viewed as a reasonable alternative, men will need reassurance that following an active surveillance protocol is likely to allow time for curative treatment if the cancer progresses.

'It's not like you just had a heart attack': decision-making about active surveillance by men with localized prostate cancer.

BACKGROUND: Growing recognition that active surveillance (AS) is a reasonable management option for many men diagnosed with localized prostate cancer led us to describe patients' conceptualizations of AS and reasons for their treatment decisions. METHODS: Men were patients of a multidisciplinary prostate cancer clinic at a large tertiary cancer center where patients are routinely briefed on treatment options, including AS. We conducted a thematic analysis of interviews with 15 men who had chosen AS and 15 men who received radiation or surgery. RESULTS: Men who chose AS described it as an organized process with a rigorous and reassuring protocol of periodic testing, with potential for subsequent and timely decision-making about treatment. AS was seen as prolonging their current good health and function with treatment still possible later. Rationales for choosing AS included trusting their physician's monitoring, 'buying time' without experiencing adverse effects of treatment, waiting for better treatments, and seeing their cancer as very low risk. Men recognized the need to justify their choice to others because it seemed contrary to the impulse to immediately treat cancer. Descriptions of AS by men who chose surgery or radiation were less specific about the testing regimen. Getting rid of the cancer and having a cure were paramount for them. CONCLUSIONS: Men fully informed of their treatment options for localized prostate cancer have a comprehensive understanding of the purpose of AS. Slowing the decision-making process may enhance the acceptability of AS.

Lack of follow-up of prostate-specific antigen test results.

OBJECTIVES: We obtained population estimates of the prevalence of lack of diagnostic follow-up after an abnormal prostate-specific antigen (PSA) result and assessed the role of sociodemographic, access, and risk perception factors on follow-up of abnormal tests. METHODS: We used data from the 2000 National Health Interview Survey cancer control supplement. For 3,310 men aged 40 or older with a PSA test, 463 men reported an abnormal PSA test. Outcomes were abnormal PSA and lack of diagnostic follow-up in the latter group. Covariates for logistic regression included sociodemographic variables (age, race/ethnicity, and education), access to care (health insurance and usual source), and risk of cancer (family history and perceived risk). Survey analysis procedures accounted for the complex survey design. RESULTS: Abnormal PSA results were associated with age, family history, and perceived risk of cancer. Approximately 15% of men with abnormal PSA tests reported no follow-up. The estimated number was 423,549 (95% confidence interval [CI] 317,755, 529,343). No follow-up was more likely in Hispanic men (odds ratio [OR] = 2.21, 95% CI 1.04, 4.70) and men without insurance (OR=6.56, 95% CI 2.02, 21.29), but less likely in men with a family history of prostate cancer or higher perceived risk of cancer. CONCLUSIONS: Substantial numbers of men had no follow-up of abnormal PSA tests. Primary care physicians should assess continuity of care following abnormal PSA results. Data about prostate cancer screening and follow-up are needed to support clinical and policy decisions.

Acculturation and depressive symptoms among pregnant and postpartum Latinas.

OBJECTIVES: Among childbearing Latinas, higher acculturation has been found to be significantly associated with increased risk for mental health problems, although these findings have been inconsistent. The aims of this study are to assess and compare the prevalence of elevated depressive symptoms among pregnant and postpartum U.S.- and Mexican-born Latinas, and to describe the relation of elevated depressive symptoms and acculturation indicators. METHODS: A convenience sample of 439 pregnant and postpartum Latinas attending Public Health Clinics in San Antonio, Texas was screened for depressive symptoms using the Center for Epidemiologic Studies Depression (CES-D) Scale. Women with a score of 21 or greater were classified as having elevated depressive symptoms. Sociodemographic data, including birth country and language of interview, were collected as indicators of acculturation. RESULTS: 21% of the sample had moderate depressive symptoms; 15% met the threshold for high depressive symptoms. Bivariate analysis showed Latinas who were U.S.-born, single, preferred English or were pregnant were more likely to express elevated levels of depressive symptoms. Being U.S.-born, pregnant and single was significantly associated with moderate levels of depressive symptoms in logistic regression analyses controlling for other variables in the model. Controlling for other variables, being pregnant and single was significantly associated with high levels of depressive symptoms. CONCLUSIONS: Higher acculturation, pregnancy and single status were positively associated with elevated depressive symptoms. Screening for depression during pregnancy is important for this population group, given Latinas' high rates of fertility and births to single women, particularly among more acculturated, U.S.-born Latinas.

Gender, social ties, and cancer screening among elderly persons.

Objective. This study examines the association of social ties and cancer screening. Method. Data from the Longitudinal Study on Aging II include 4,419 respondents (70 to 85) who completed Wave 2. The dependent variable is receipt of screening within the past 2 years, measured at Wave 2. Social network variables include marital status, interaction with friends, relatives, and children, and church attendance. Results. Women were higher on most social tie measures, except marriage, and less likely to have mammography than men were to have prostate cancer screening. Also, the decline of screening with age was greater for women. For women, screening was related to contact with friends, relatives, and children but not marital status or church attendance. For men, screening was higher in the married and church attendees, but contact with friends, relatives, and children was not associated with screening. Discussion. Cancer screening interventions that use interpersonal communication channels should target distinct relationships for older women and men

US men discussing prostate-specific antigen tests with a physician.

PURPOSE: Informed decision making is recommended for prostate cancer screening. I wanted to examine demographic and screening-related factors associated with men's discussion of the advantages and disadvantages of prostate-specific antigen (PSA) tests with their physicians. METHODS: I used data from 2,184 men aged 50 years and older who reported a screening prostate-specific antigen (PSA) test in the 2000 National Health Interview Survey cancer control supplement. The dependent variable was discussion of the advantages and disadvantages of the test before it was conducted. RESULTS: Sixty-three percent of tested men reported a discussion in relation to their most recent PSA test. Discussion was more common for African American men and those with a usual source of care, and when the physician initiated the testing. CONCLUSIONS: Characteristics of the patient-physician relationship were more central to the discussion of risks and benefits than were patient attributes. Future research should examine what role practice setting and the physician-patient relationship play in a discussion of PSA testing and how to facilitate active involvement of patients in decision making.

Exploring beliefs about prostate cancer and early detection in men and women of three ethnic groups.

OBJECTIVES: Practice guidelines support informed or shared decision-making about prostate cancer screening. To compare beliefs across three racial/ethnic categories concerning prostate cancer etiology and risk, screening routines, and shared decision-making, we conducted 12 focus groups. METHODS: Participants were recruited in primary care settings and included 33 African Americans, 35 Hispanics, and 22 non-Hispanic Whites. Of the 90 participants, 53% were male. RESULTS: Groups identified heredity, age, race, sexual activity, and other lifestyle influences as risk factors. Few were aware that prostate cancer is asymptomatic in early stages. Confidence in knowledge of screening routines was high, but included misconceptions supporting initiation of screening at earlier ages and at shorter intervals than professional recommendations. Females encouraged screening of male relatives to protect their health. DISCUSSION AND CONCLUSION: While racial/ethnic groups had similar views and knowledge about screening, African Americans wanted to organize to address the threat of prostate cancer in their communities. Hispanics had awakening awareness of the health risks of prostate cancer. Non-Hispanic Whites were aware of the health threat of prostate cancer, but their approach to health protection was more individual and less community focused than that of African Americans. Participants were not aware of controversy about screening. PRACTICE IMPLICATIONS: Developers of educational materials to support informed or shared decision-making should be aware that initial views of prostate cancer screening are positive.

Is "Active Surveillance" an Acceptable Alternative?: A Qualitative Study of Couples' Decision Making about Early-Stage, Localized Prostate Cancer.

The objective of our study was to describe decision making by men and their partners regarding active surveillance (AS) or treatment for early-stage, localized prostate cancer. Fifteen couples were recruited from a cancer center multispecialty clinic, which gave full information about all options, including AS. Data were collected via individual, semi-structured telephone interviews. Most patients were white, non-Hispanic, had private insurance, had completed at least some college, and were aged 49-72 years. Ten chose AS. All partners were female, and couples reported strong marital satisfaction and cohesion. All couples described similar sequences of a highly emotional initial reaction and desire to be rid of the cancer, information seeking, and decision making. The choice of AS was built on a nuanced evaluation of the man's condition in which the couple differentiated prostate cancer from other cancers and early stage from later stages, wanted to avoid/delay side effects, and trusted the AS protocol to identify negative changes in time for successful treatment. Treated couples continued to want immediate treatment to remove the cancer. We concluded that having a partner's support for AS may help a man feel more comfortable with choosing and adhering to AS. Using decision aids that address both a man's and his partner's concerns regarding AS may increase its acceptability. Our research shows that some patients want to and do involve their partners in the decision-making process. Ethical issues are related to the tension between desire for partner involvement and the importance of the patient as autonomous decision-maker. The extended period of decision making, particularly for AS, is also an ethical issue that requires additional support for patients and couples in the making of fully informed choices that includes AS.

The relationship of diet and exercise for weight control and the quality of life gap associated with diabetes.

OBJECTIVE: The demanding behavioral changes for weight control to manage diabetes might contribute to lower quality of life (QOL). This research examines whether the demands of diet and exercise contribute to lower QOL among persons with diabetes. METHODS: Data were from the Behavioral Risk Factor Surveillance System (BRFSS), which measures days in the last month for poor physical health, poor mental health, limited activity, pain, depression, stress, poor sleep, and high energy, as well as weight control efforts. RESULTS: Respondents with diabetes averaged more impaired days on every measure of QOL. Neither efforts to control weight nor dieting were related to any measure. Exercise was associated with reductions in impaired days on all measures. CONCLUSIONS: Exercising to control weight had a powerful effect on reducing QOL differences while attempting to maintain or reduce weight, and dieting to do so had no effect.

Interpretation of prostate cancer screening events and outcomes: a focus group study.

Professional guidelines call for physicians to provide patients with information to permit informed decision making. We conducted focus groups to obtain reactions to numerical information about events and outcomes related to prostate cancer screening (prevalence, natural history, accuracy of screening, and treatment outcomes). The focus groups were used to help develop a balance sheet, a decision aid that explicitly compares likelihood and value of outcomes. In all, 90 persons participated in 12 focus groups homogeneous in ethnicity (African American, White, Hispanic) and gender. Discussions were transcribed and analyzed using qualitative methods. The view of screening derived by participants from the numerical information was less positive than initial opinions based on the media and confidence in medicine. Participants suggested shorter screening intervals, regular screening, and different treatment methods. No single topic was seen as sufficient for the screening decision. The balance sheet should cover prevalence and outcomes of screening and treatment.

A community-based intervention to promote informed decision making for prostate cancer screening among Hispanic American men changed knowledge and role preferences: a cluster RCT.

OBJECTIVE: We assessed the short-term effects of a community-based intervention for Hispanic men to encourage informed decision making (IDM) about prostate cancer screening with prostate specific antigen (PSA). METHODS: All senior social and housing centers in El Paso, TX were randomized to intervention, a group-based Spanish language educational program facilitated by promotores (12 centers; 161 men) [I's], or to control, promotores-facilitated diabetes video and discussion (13 centers; 160 men) [C's]. RESULTS: Participants had low levels of schooling and baseline knowledge; 44% reported previous PSA testing. At post-test, the I's made large knowledge gains, increased their understanding that experts disagree about testing, shifted toward more active decision making roles, were more likely to believe that it is important to weigh the advantages and disadvantages of screening and to anticipate potential screening outcomes in making a decision, and were less likely to consider the screening decision easy. The I's did not change in their screening intention or the belief that choosing not to be screened could be a responsible choice. CONCLUSIONS: A community-based intervention to support IDM for prostate cancer screening can increase knowledge and may promote more active involvement in decision making about prostate cancer screening. Such an approach can increase knowledge and may promote more active involvement in decision making about prostate cancer screening. PRACTICE IMPLICATIONS: It is feasible to develop and implement a community-based intervention program to promote IDM for prostate cancer screening.

What is needed for informed decisions about prostate cancer screening: perspectives of African-American and Hispanic men.

Professional guidelines suggest that men should learn about risks and benefits of screening to make informed decisions consistent with their preferences. We used concept mapping to investigate views of informed decision making (IDM) of minority men. Statements about what men need for IDM about prostate cancer screening were sorted by similarity and rated for importance by 16 Hispanic and 15 African-American men. Multidimensional scaling and cluster analysis were used to develop a concept map for IDM. The 10-cluster solution was selected. The clusters rated most important were labeled Future Considerations, What to Know and Decision to Make. Clusters labeled Social Support and Sharing Perspectives depicted social aspects of the decision and were intermediate in importance. There was strong correlation in relative importance ratings of clusters by African-American and Hispanic men. However, African-American men gave higher importance ratings than Hispanic men. Concept mapping, a method with strong participatory elements, was useful in identifying conceptual frameworks for IDM of African-American and Hispanic men. Health education to support IDM requires some shifts in focus and strategy. It is important that interventions with minority men build upon a strong conceptual framework.

Use and awareness of prostate specific antigen tests and race/ethnicity.

PURPOSE: This study is an assessment of racial and ethnic differences in the awareness and use of prostate specific antigen tests. MATERIALS AND METHODS: This is a secondary analysis of the 2000 National Health Interview Survey cancer control supplement. The subsample was 4,717 men 50 years old or older without prior prostate cancer. Outcomes were awareness and use of prostate specific antigen in a lifetime or the last year. Covariates included race/ethnicity, family income, education, age, perceived risk, health insurance and usual source of care. Multiple logistic regression was used to assess the effect of race/ethnicity on awareness and use of prostate specific antigen, controlling for covariates. Survey analysis procedures were used to account for the complex survey design. RESULTS: The association of race/ethnicity and the outcomes of awareness and lifetime prostate specific antigen use persisted when controlling for socioeconomic status, access and other variables. The largest differences were between Hispanic and non-Hispanic white men. Hispanic-American and black men were disadvantaged with respect to education, income and access to care, characteristics associated with lower use and awareness. In alternative models restricted to men aware of prostate specific antigen, neither race/ethnicity nor socioeconomic status was associated with use of prostate specific antigen. CONCLUSIONS: Race/ethnicity is associated with prostate specific antigen awareness and use. Lack of awareness of the prostate specific antigen test contributes to its lower use by racial/ethnic minorities. Future research should explore factors associated with lower use of the prostate specific antigen test by Hispanic men.