Health Education Research Advance Access published online on May 9, 2008
Health Education Research, doi:10.1093/her/cyn018
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What is needed for informed decisions about prostate cancer screening: perspectives of African-American and Hispanic men
1 The University of Texas School of Public Health, San Antonio Regional Campus, San Antonio, TX 78229, USA
2 Insights Consulting, Inc., Columbia, SC 29205, USA
3 The University of Texas Prevention Research Center and The University of Texas School of Public Health, El Paso Regional Campus, El Paso, TX 79902, USA
4 Cancer and Chronic Disease Consortium, El Paso, TX 79905, USA
5 Carolina Community Based Health Supports Networks, Inc., Columbia, SC 29202, USA
6 The University of Texas Prevention Research Center and Division of General Internal Medicine, The University of Texas Health Science Center at Houston, Houston, TX 77030, USA
Correspondence to: * Correspondence to: S. L. McFall. E-mail: stephanie.l.mcfall{at}uth.tmc.edu
| Abstract |
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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.
| Introduction |
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Informed decision making (IDM) about health decisions has assumed importance as physicians have moved from being paternalistic to involving the patient in decisions. The decision to seek prostate cancer screening by prostate-specific antigen (PSA) testing is well suited to IDM for several reasons.
An important reason is that prostate cancer is associated with significant burden of disease and marked by racial/ethnic disparities. Prostate cancer is the most common cancer in men other than skin cancer and the second leading cause of cancer mortality [1]. In the United States, African-American men have a higher incidence rate and a mortality rate more than twice that of non-Hispanic whites [2]. Incidence and mortality rates are lower for Hispanic than for non-Hispanic white men [3], but Hispanic and African-American men are more likely than whites to be identified at advanced or symptomatic disease stages [4–6].
The principal reason for IDM about prostate cancer screening is the substantial uncertainty associated with it. Despite the significant burden of disease, the evidence of benefits of treatment for reducing mortality has not been clearly established [7]. Treatments may also adversely affect quality of life by contributing to sexual impotence and urinary incontinence [8–10]. Given the frequency of false positives and false negatives of the screening procedures, some men receive unnecessary invasive testing, while cancer may be missed in others [11, 12]. Professional guidelines for screening may have differed but they agree that it is important to provide information to men about the advantages and disadvantages of screening so their choices are informed and consistent with their values and preferences [13–16]. That is, each man should make an informed decision concerning prostate cancer screening—a decision based on information about the tests, which balances information about screening's advantages and disadvantages and which reflect his own values and preferences.
The definition of IDM
There is substantial variation in how researchers have defined IDM and shared decision making, a closely linked concept [17]. The Centers for Disease Control and Prevention (CDC) Task Force on Community Preventive Services defined IDM as any intervention in communities or healthcare system intended to promote individuals informed decisions, with that subset of interventions in clinical settings distinguished as shared decision making [18]. Braddock et al. [19] proposed seven criteria for IDM for complex decisions (like prostate cancer screening). The criteria include the patient's active participation in decision making, clarification of the nature of the decision, specification of alternatives, discussion of potential benefits and risks of alternatives, statement of uncertainties, assessing the patient's understanding and eliciting patient's preferences [19]. The criteria were derived from a synthesis of the bioethics literature and professional consensus on the elements of IDM.
Specific to prostate cancer, Chan and Sulmasy [20] used a Delphi method with physicians and patients to identify facts needed for informed consent. The facts included that men should weigh the risks and benefits of screening to make a personal choice, that it is not known whether screening will result in reduced mortality and that both false negatives and false positives occur. In addition, the physicians consulted said that men should be aware that cancers detected by PSA are more likely to be confined to the prostate and potentially curable, despite the uncertainty associated with the treatment of early or localized cancer.
Multiple decision aids have been developed for prostate cancer screening. They have largely been atheoretical and have not incorporated the perspectives of the men making the decision [21, 22]. Omission of the men's perspectives is particularly problematic in dealing with racial and ethnic minorities who in the past have not been included in most clinical studies of shared decision making. However, recent research has the potential to shift this balance through projects in partnership with community-based organizations and other non-clinical settings [23, 24]. This emerging research suggests that conducting interventions in non-clinical settings may address issues of trust of the medical profession or otherwise reduce cultural barriers encountered by minority men [23].
This study is part of a larger project that was funded by the Centers for Disease Control and Prevention to the University of Texas School of Public Health with the collaboration of the University of South Carolina. Field sites are in Columbia, SC and El Paso, TX. The overall project uses a community-based participatory research approach. Our major community partners are the Cancer and Chronic Disease Consortium of El Paso and the Carolina Community Based Health Supports Networks, Inc., which works with African-American churches. As we prepared to develop interventions to support IDM in non-clinical settings, we thought it important to learn about how men think about IDM.
This article uses concept mapping to depict what African-American and Hispanic men think they need for IDM about prostate cancer screening. The concepts shown as important in the concept map help clarify the elements of IDM about prostate cancer screening as seen by men who confront this decision. Concept mapping is a participatory method that combines qualitative and quantitative research methods to produce a graphical representation of a concept [25, 26].
| Methods |
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The concept mapping method was used to develop a conceptual framework for IDM about prostate cancer screening. Typical implementations of the method use a defined group of participants to generate statements, sort and rate statements and interpret the statistically analyzed concept maps. This sequence has strong potential for participant burden [27]. We modified that sequence such that statements were extracted from extensive key informant interviews about prostate cancer screening and sorting and rating was done by groups of men similar in age and race/ethnicity to the target population of the planned intervention. Following statistical analysis, interpretation of the concept maps was done by research team members of university researchers and community partners. Thus, the concept mapping process was built on a platform of qualitative formative research [26, 28], but the level of participation from members of the target population was reduced relative to typical implementations.
Background of key informant interviews
Twenty-four key informant interviews were the primary source of statements about IDM. The interviews were conducted to learn about how prostate cancer screening was viewed within the specific communities. The key informants selected had frequent contact with the target population around issues of health or insight into effective communication channels. The 12 key informants in El Paso were all Hispanic; 8 were men, 3 were health care providers, 7 worked with a health or social service agency and 2 were priests or ministers. In South Carolina, our community partner was Baptist Educational and Missionary Convention of South Carolina, a network of >1100 churches. The 12 key informants were all African-American; 9 were male, 4 worked in health and social service organizations, 4 were educators, 3 worked in the media, politics or advocacy and 1 was a health care provider. Four of the key informants were ministers in addition to these other occupations.
All interviews were audiotaped and descriptively coded using a codebook. Atlas.ti [29] was used to support the qualitative analysis.
For this secondary use of the interviews, we coded brief statements related to informed decision making about prostate cancer screening. These statements condense the remarks of one or more key informant. As an example, one key informant in Texas described the use of herbal remedies in his community and that the medical community needed to get in touch with this practice. He added, "There's a lack of trust for the medical community because the medical community doesn't treat the whole person. Looks at you, says you're sick, here's a medical prescription, you owe me $200. We're used to a more personal approach." The statement was summarized as Have a physician who emphasizes personal care, treats the whole person" (statement no. 50). One person edited the statements to reduce redundancy, split double-barreled statements and simplify complex wording. The statements were randomly ordered and printed on card stock for sorting. The final list of 69 statements is listed in Table II. In Texas, we printed cards with English on one side and Spanish on the other, so that participants could work in their chosen language. However, all participants used the Spanish side. The Spanish translation is available from the authors.
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Sorting and rating of statements
The majority of the participants in this phase had previously participated in focus groups as part of the larger study's formative research. While the topics and formats of the focus groups varied, their participants had exposure to issues associated with decision making about prostate cancer screening.
Sorting and rating of statements was done by 15 men in South Carolina and 16 men in Texas. This sample size is adequate for sorting [28]. Participants worked independently in small group settings. This made the task more pleasant for participants while increasing the efficiency of data collection. A warm-up sorting task introduced participants to the sorting activity. The task was to sort 10 cards describing characteristics of cars that might be considered in the decision to buy a car (e.g. cost, number of seats, etc.) according to their similarity.
The focus prompt for the sorting was In order to make an informed decision about prostate cancer screening, I need .... Each man was told to group the 69 statements in relation to the prompt so that those he saw as similar in meaning were in the same pile, making as many piles as he chose. The restrictions in sorting were that he could not make a pile containing all 69 statements, that each statement could not go into its own individual pile and that he could not create a miscellaneous pile. The pile sorting procedure is efficient for collecting judgments about a large number of statements [25]. Following the sort, each participant rated the 69 statements on a 1–5 scale for how important they are for making a decision about prostate cancer screening.
The sorting process was the basis for a binary symmetric 69 x 69 matrix for each sorter where entries of one indicate that two statements were placed in a single pile and zero otherwise.
Analysis and identification of clusters
Data aggregation, analysis and production of graphics and reports were conducted using The Concept System® 4.0 [30]. The individual matrices were summed across the participants to produce an aggregate matrix where cell entries show the number of participants who placed each pair of statements in the same pile. This matrix is the basis for analysis by multidimensional scaling (MDS), the first stage of the analysis. The MDS analysis was conducted in two dimensions to more conveniently display the relationships among sorted statements [31]. This solution is displayed as a point map where each statement is represented by a numbered point. Statements that are calculated to be less similar are farther apart on the map. However, there is no meaning to the direction of the space, e.g. up or down.
The spatial coordinates of the MDS solution were analyzed using hierarchical clustering with Ward's algorithm [32]. This procedure produces non-overlapping clusters of more similar statements in the two-dimensional space. Points depicted in a cluster together are more similar to each other in the two-dimensional space than to other point statements, according to the sort data provided. The solutions are displayed in a cluster map, which encloses clusters in the original point map.
The interpretation was conducted by members of the research team, including community partners. We assessed a range of solutions: from 6 clusters to 15 clusters. In making the interpretation, we examined whether the statements or points in clusters were sensible and what were the points in the clusters that were rated most important for IDM. We selected the 10-cluster solution as balancing useful conceptual distinctions with relative simplicity of interpretation.
Attributes of statements grouped in a cluster were also examined. For example, for each statement we calculated a mean importance rating across the 31 participants. We also calculated a cluster mean importance rating across all statements in a cluster.
| Results |
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Participants in Texas had lower education and income levels than in South Carolina. Participants were similar in age in the two settings with the majority of men being
55 years old (see Table I for descriptive information).
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We initially computed concept maps separately for the two racial/ethnic groups. However, the spatial configurations and goodness-of-fit measures were sufficiently similar to draw a single map for the total sample. The overall fit or stress value of the scaled two-dimensional point map was 0.32, within the range regarded as acceptable for interpretation (0.25–0.35) [31]. A lower stress value indicates a better fit. To conserve space, the point map is not separately displayed; locations of individual statements (points) are indicated with numbers within the cluster map (Fig. 1).
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Figure 1 shows the cluster map for the 10-cluster solution. As noted, the cluster map is overlaid on the two-dimensional point map. The clusters are labeled with brief descriptions, when referred to in the text, they are italicized. Numbers for each statement are identified in Table II.
The center of the map contains two clusters labeled Weighing Pros and Cons and Seeking Knowledge. The Weighing Pros and Cons cluster includes the view that prostate cancer screening is an important health issue, that there is a decision to be made about screening and that men should participate in the decision by evaluating the advantages and disadvantages of screening. There is also the idea that men should consider the importance of screening for their peace of mind. This cluster also includes the idea that for IDM men should be willing to talk about and get information concerning prostate cancer.
The cluster Seeking Knowledge has more to do with the decision process. It includes knowing that screening is sought before symptoms appear and that treatment can bring negative sexual and urinary outcomes. The cluster also contains statements about being able to read and understand educational materials.
The small cluster labeled Future/Treatment was the last cluster to split off. It divided from the Weighing Pros and Cons cluster. Its statements are about dealing with the potential cascade of events resulting from a positive screening result such as being willing to consider the outcomes of treatment in making the screening decision and considering whether they would want treatment if screening identified prostate cancer.
The band of clusters at the left are labeled Social Support, Sharing Perspectives and Consider My Risk. The Social Support cluster has items about important groups, spouse, family and Church and their support for IDM.
The cluster below Social Support was labeled Sharing Perspectives, though church-based participants in South Carolina often used the term witnessing to convey similar ideas. This cluster identifies the importance of communicating personally important information about prostate cancer screening. Statements include hearing from cancer survivors, the importance of sharing information about screening and IDM with friends and evaluating whether family members have an expectation that men be screened. These statements convey a sense of shared responsibility within communities for communicating about prostate cancer screening.
The cluster Consider My risk contains ideas of collective and personal risk. Statements include knowing the impact of prostate cancer for his racial or ethnic group, being aware of a family history of prostate cancer, thinking about the experience of those with prostate cancer and hearing about screening from those who have been screened. It also includes statements that might balance feelings of threat related to risk such as that cancer is not a death sentence or that prostate cancer is often slow growing and thus does not always harm men with prostate cancer.
The right-hand band includes Hear from My Physician, What to Know and PSA and DRE. DRE is an abbreviation for digital rectal examination, a screening method in which a physician inserts a gloved finger into the rectum to physically examine a surface of the prostate.
HEAR from My Physician has statements about transactions between a patient and his physician or the larger health care system. Many statements concern getting information from the physician and behaviors, such as asking questions that would support IDM and being aware that there are conflicting medical recommendations about prostate cancer screening. The statements also refer to the importance of trust, personal respect shown by the physician and the physician's familiarity with a man's culture and language.
The statements in What to Know concern basic information about the prostate and prostate cancer screening such as whether screening saves lives, what the prostate does, how the PSA test is done and what test numbers mean.
The cluster labeled PSA and DRE has statements related to risks for prostate cancer that may prompt screening, recommended ages for the tests, how these tests are done and that the tests can have false positives.
The Drawbacks of Screening cluster includes the information that screening may not detect all cancers and drawbacks related to pain, embarrassment or as threats to masculinity.
Table III shows the mean importance rating of clusters by ethnic group. Ratings could potentially range from 1 to 5, with 5 being very important. Clusters with highest importance ratings (>4.0) were Future/Treatment, What to Know, Weighing Pros and Cons, Hear from My Physician, PSA and DRE and Seeking Information. These clusters emphasize cognitive aspects of the screening decision. Clusters rated >3.0 but <4.0 included Consider My Risk, Social Support and Sharing Perspectives. These clusters emphasize social aspects of the screening decision. The cluster Drawbacks of Screening was rated <3.0. The central topic of this cluster is about drawbacks of the DRE.
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There was substantial agreement in the relative ordering of importance ratings by African-American and Hispanic men. The Pearson correlation coefficient for average cluster importance ratings of the two groups was 0.98. However, the cluster importance ratings by African-American men were significantly higher than those of the Hispanic men for 9 of the 10 clusters. The exception was the PSA and DRE cluster, which did not differ in mean ratings by ethnicity.
| Discussion |
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This study used concept mapping to identify important themes in IDM for prostate cancer screening from the perspectives of African-American and Hispanic men. Defining IDM is an important step in constructing interventions and obtaining the definition directly from men of the population enhances the relevance of any intervention based upon it. The practice utility of the concept map for this study included serving as a standard to check for inclusion of elements in the IDM interventions for non-clinical settings [33]. We had planned to use the map as a guide for measurement decisions as well [34]. However, we had such pressures on the length of our evaluation instruments that we could not take full advantage of some measures suggested by the concept mapping.
The standard procedures for concept mapping have a single group of participants involved in multiple steps including generation, rating and sorting of statements and interpretation of concept maps. In this study, the generation step was based on pre-existing interviews, participants from the target population were the sorters and members of the research team interpreted the concept map. This approach had the advantage of greater depth in the generative process and reduced the burden of participation.
Some consideration should be given to the similarities and differences between the key informants and the sorters. Among the major differences were that the key informants had higher education levels and some were female. Key informants were similar to participants doing the sorting in that they were established residents of the communities and all were Hispanic or African-American. The more critical comparison would be on level of knowledge. Key informants were not selected for their knowledge about the prostate cancer screening controversy. Indeed, several of them said they knew little about the advantages and disadvantages of screening, though others, especially the health care workers and physicians, were more knowledgeable. The majority of the men in the sorting task had previously participated in focus groups for the project and had some knowledge about issues associated with prostate cancer screening. In weighing these considerations, we think that the statements derived from the key informant interviews had sufficient relevance to the sorters and that the knowledge levels of key informants and sorters overlapped.
The concept map of IDM had some clusters similar to the themes described in Woolf et al. [35]. The central band with Weighing Pros and Cons and Seeking Information is related to themes of discussing benefits and risks and specifying the nature of the decision. The band toward the right with clusters labeled PSA and DRE and What to Know is similar to themes about describing alternatives. This includes the important belief that there is a decision to be made regarding prostate cancer screening.
In contrast to the criteria for IDM presented by Braddock et al. [19], the concept map showed that the African-American and Hispanic men saw social relationships as moderately important to decisions about prostate cancer screening. The social considerations were broad ranging, from social support of IDM by family members and spouse to the importance of trust and understanding in the patient–physician relationship. Their social concerns also included a strong sense of collective responsibility in meeting the threat of prostate cancer. This view may be accentuated by the strong community orientation of the participants who were recruited in non-clinical settings. Finally, the concept map also placed less emphasis on uncertainty than was discussed by Braddock et al. [19].
The cluster with the lowest importance rating, the Drawbacks of Screening cluster, is mostly about men's negative reactions to the DRE. In the key informant interviews and 20 focus groups not reported in this article, negative comments about the DRE were common. Key informants also frequently spoke of the DRE as a barrier to prostate cancer screening, though not necessarily to IDM. The sorters, more representative of the planned target group, seemed to share this view as seen in the low importance ratings and in their comments, which referred to the importance of getting past these negative feelings. One man labeled this pile, Good to be tested even if it is embarrassing.
We have found, along with other researchers [27], that concept mapping provides a relatively quick way to focus qualitative information. With respect to the central question—what do men need for IDM?—concept mapping gives a more structured view than focus groups. The visual representation helps to show the relationship among themes [27]. For example, the concept map shows the link between the Consider My Risk and Sharing Perspectives clusters, which unite ideas of risk and health disparities with communication to reduce the burden of disease.
The study populations for this project, African-American and Hispanic men, have been underemphasized in clinical studies of decision making about prostate cancer screening. A growing literature of focus groups research with African-American men has helped to redress this neglect [23, 36–38], but studies of Hispanic men are still relatively rare. The sorting and rating patterns of the two groups were sufficiently similar to present a combined map although African-American men had higher importance ratings. In assessing this finding, it is important to realize that participants rated the statements importance for IDM relative to the other statements, not for their absolute importance. However, the higher importance ratings by African-American is consistent with perceptions of threat from prostate cancer and a sense of collective responsibility for addressing prostate cancer disparities [38]. By contrast, Hispanics are less certain if they should be particularly concerned about prostate cancer. For both African-American and Hispanic men, it is useful to identify what is needed for IDM since interventions are likely to be more effective if they satisfy participants expectations and needs.
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Centers for Disease Control and Prevention (SIP 21-04/07).
| Conflict of interest statement |
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None declared.
| Acknowledgements |
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We acknowledge the coding and data entry assistance of Kristin Shipman and Marivel Davila and the consultation and comments of Melissa Burns and Mary Kane of Concept Systems, Inc.
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Received on October 9, 2007; accepted on March 23, 2008
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