Abstract
As the prevalence of shared decision-making increases as part of the patient-clinician relationship, patient needs for information become critical aspects of preventative care and treatment decisions. It has been shown that patients who have relevant information about healthcare options make choices and decisions which are more consistent with their personal values. This is especially useful when considering the various options regarding prostate cancer screening, (PCS). PCS remains extremely controversial given the uncertainty and lack of conclusive scientific evidence regarding the consequences of having the prostate specific antigen (PSA) test. It is vital that men are fully informed of the possible ramifications of the PSA test. The purpose of this study was to identify the information needs of male patients in PCS situations in primary care medical encounters. A deductive qualitative analysis was applied to uncover reoccurring themes and critical information presented by the subjects during conversations regarding PCS. From this analysis, a preliminary conceptual map was created in order to identify and understand the levels of information needed for patients to make informed PCS decisions. Future use and development of this map may improve PCS decisions by providing a structural approach to understanding the primary issues and implications of PCS for both the patient and clinician.
Introduction
Prior studies in information needs have focused primarily on healthcare workers, specifically physicians, nurses,1,2 and case managers.3 However, as the industry has shifted from paternalistic decision making to a more shared decision-making approach, where patients are expected to have a say on their healthcare treatment, patient’s needs for information require more analysis and understanding. While systems such as decision aids have been designed to meet specific information needs regarding conditions and disease, they may not always address information and understanding from the patient perspective. Individual requirements for information vary depending on treatment and procedure, available evidence-based information and individual characteristics of patients.4 In addition, there are several benefits to patients being informed which include but are not limited to: reduction in anxiety,5,6 and improvement in the management of care.6–8.
Typically, information is provided to patients to facilitate their understanding of a medical procedure or condition, or to promote a certain health behavior. Providing patients with balanced and relevant information has been shown as a catalyst for informed choices and decisions regarding their healthcare, specifically, medical procedures and treatment.9 This information is especially useful for patients considering their options regarding prostate cancer screening.
Prostate cancer screening remains extremely controversial for several reasons.10 First, the prostate specific antigen (PSA) test carries high false positive/false negative rates. Second, it is still very difficult to distinguished between the deadliest (fast-growing and malignant), and innocuous (slow-growing and benign) prostate cancer. Third, biopsy and treatment lead to unfavorable side effects such as incontinence, impotence, pain, and gland removal. Finally, a recent large-scale study found that screening for prostate cancer many not even reduce mortality rates as earlier suspected.11 Therefore, screening and potentially treatment may cause more harm than good.
Given the significant amount of uncertainty and lack of conclusive scientific evidence associated with the PSA test, it is vital that men are provided as much information possible, as early as possible. Although general information is currently being provided to patients in many forms (pamphlets, videos, etc.), there is limited guidance available about which content and formats are most effective in enabling informed patient decisions.12, 13 That is to say, even though there are several forms of information materials to help patients understand what is involved with PCS, the information may still not be understood.13 Therefore, it is important to know what the information needs are for men when discussing prostate cancer screening and their decision on whether or not to be screened.
The purpose of this study was to identify the information needs of male patients in PCS situations in primary care medical encounters. From this analysis, a preliminary conceptual map was created in order to identify and understand the levels of information needed for male patients to make informed PCS decisions.
Methods
This study is a secondary analysis of data collected as part of a larger, ongoing study involving patient initiated PCS discussion. Between January 2009–December 2009, 62 patient/physician primary care medical encounters were recorded and transcribed. The patient participants included African-American and Caucasian males between the ages 45–70, recruited through the University of Pennsylvania Medical Center.
The recorded and transcribed medical encounters were analyzed using a qualitative, deductive content analysis. Qualitative deductive content analysis is “a research method for the subjective interpretation of the content of text data through the systematic classification process of coding and identifying themes or patterns.”14 This type of analysis is most often used in order to uncover or model people’s information related to behaviors and thoughts.15 The following actions were taken during the content analysis process.
Define the Unit of Analysis
In the process of preparing the data to be analyzed, a unit of analysis needed to be defined. The unit of analysis is the basic unit of text that is classified during the content analysis. Messages were unitized before they were coded. Defining the coding unit is one of the most fundamental and important decisions.16 An individual theme is usually used as the unit for analysis rather than physical linguistic units, such as words or sentences. In this case, the theme used as the coding unit was the information needs of male patients regarding PCS during a primary care encounter.
Develop Categories and a Coding Scheme
The categories and coding scheme were derived from two sources: the literature (information materials and PCS issues) and the data of the recorded medical encounter conversations. As the concept of patient information needs was used as the basis for the inquiry, a deductive reasoning approach was applied for this study. The next step was to develop a categorization matrix, followed by the development of a coding manual to ensure coding consistency. Category names, their respective definitions and rules for assigning codes were included in the manual. In addition to the author, a nursing research assistant reviewed and coded the data in order to validate the developed themes and conceptual map. After the categorization matrix and coding manual were developed, all data were reviewed for content and coded according to identified categories. Finally, conclusions were drawn from the coded data by exploring the properties and dimensions for the categories.
Results
The average age of the men was 57, with a minimum age of 47 and a maximum age of 76. Thirty-nine of the patients were African American, and 23 were Caucasian. Table 1 shows the full demographic data of the participants.
Table 1:
Patient Demographics
| ATTRIBUTE | COUNT | PERCENTAGE |
|---|---|---|
| AGE | ||
| Average | 57.3 | |
| RACE | ||
| Black | 39 | 62.9% |
| White | 23 | 37.1% |
| EDUCATION | ||
| Up to 8th Grade | 2 | 3.2% |
| Some High School | 2 | 3.2% |
| High School Complete | 15 | 24.2% |
| Vocational/Techical | 9 | 14.5% |
| Some College | 9 | 14.5% |
| Bachelors | 7 | 11.3% |
| Masters | 18 | 29.0% |
| CONDITIONS | ||
| Hypertension | 28 | 45.2% |
| Emphysema | 1 | 1.6% |
| Heart Disease | 5 | 8.1% |
| Cancer | 2 | 3.2% |
| Diabetes | 12 | 19.4% |
| TOTAL POPULATION | 62 |
Main Themes
A few main themes were repeatedly mentioned by the subjects as being important information required to understand and decide the particular route regarding PCS: confusion between PCS and colon cancer screening; mortality rate of prostate cancer; clarification of screening tests; understanding the controversy surrounding PC and PCS tests (Table 2). These themes overlap but each emphasizes a distinct characteristic involved in patient information needs in a primary care setting.
Table 2:
Main Themes from Medical Encounters
| Main Themes |
|
Prostate Cancer Screening vs. Colon Cancer Screening Many patients confused PCS with colon cancer screening (Colonoscopy) procedures: |
| MD: “We also should screen you for prostate cancer today.” Pt: “Ha. No, Doc. I’m not into that…putting a big tube up there…no,no.” MD: You are talking about colon cancer screening - a colonoscopy. |
| MD: So do you want to talk about prostate cancer screening? Do you know what it’s all about? Pt: Umm, yeah I know what it’s about. They make you go to sleep and put a tube with a camera up there to look about for cancer. MD: Okay, well that’s a colonoscopy. That is for screening for colon cancer. |
|
Mortality rate for Prostate Cancer Many patients were unclear with the background and mortality rates of prostate cancer: |
| Pt: “So you don’t think I could die from this? It’s cancer though right?” MD: “Now, I mean, listen. Here’s the thing. You do have other serious medical problems that you know about.” Pt: “Yeah, heart” MD: “Heart’s not great. Kidneys…So if I were to talk to you about it, do I think you’re going to pass away from prostate cancer? Probably not. It would probably be something else. But, it is your right to get the screening if you want it.” |
|
Clarification of tests & understanding the controversy surrounding the screening tests Many patients needed additional information/clarification regarding the PSA test: |
| Pt: I think I understand the risk factors for prostate cancer. Because of my history…. Is there any reason not to be screened? They said there were two things. The rectal exam which is uncomfortable but that doesn’t bother me. The PSA which can lead to incontinence and you know, with my kidney problems. Is that PSA, is that something that might not be good for me? MD: The PSA is just a blood test. Pt: Okay. But it can lead to…it can lead to incontinence and impotence right? MD: No, it’s just a blood test. If it comes back high, then we would refer you to get biopsies of your prostate and that’s when you can run into problems. Particularly, if you need to be treated for it [prostate cancer], the treatment can be worse than the disease. So picking it up using the PSA, picking up prostate cancer hasn’t really been shown to make men who have it live longer or do better because it’s usually a slow growing cancer that most men will actually have by the time they’re about 8o. So that’s the issue with the blood test. But it is just a blood test. Pt: Oh. Okay. |
|
Continue open discussion over a period of time to reinforce the information & understanding of the issues. Many patients indicated that, while they were not interested in immediate screening, they were interested in maintaining an ongoing dialogue with their physician regarding PCS: |
| MD: But I just have to be very clear, you’re saying you don’t want to get it tested today? Pt: Well, I’m not saying I don’t want to get it tested but maybe not today. MD: Not today. That’s fine. As long as I know that we should keep talking about it. Pt: Yes And going over it again and talking about it, can help me get it and figure out what I want to do… eventually. MD: That’s what I’ll put. |
Conceptual Framework Map
A preliminary conceptual framework map (Figure 1) was developed from the main themes that arose during the content analysis. The objective of this map is to generate understanding on the stages of information needs for participating in decision making regarding PCS. The framework is a progressive and iterative process composed of four inter-dependent elements which work to describe core challenges associated with PCS and determine sources of individual differences in relation to behavioral intent to participate in shared decision-making in the event of a medically uncertain situation.
Figure 1:
Conceptual Framework Map
The levels of information represented in the framework are as follows:
Foundational – information needs related to understanding and recognizing the basic fundamentals surrounding prostate cancer and prostate cancer screening. Questions at this level may include: What is the prostate? What is prostate cancer? What types of screening tests are available for prostate cancer? What is involved with each screening test?
Contextual – information needs related to the understanding of the controversy and uncertainty surrounding prostate cancer screening, in particular the potential consequences of a PSA test.
Personal – information needs related to includes the applied understanding of PCS options and choices, side effects, and risk averse for a particular patient.
Action – information needs related to reviewing information from the preceding levels, making decisions to be screened and maintaining ongoing discussions regarding PCS.
Discussion and Conclusion
The decision to be screened for prostate cancer is difficult. Shared decision-making between a patient and his doctor has the potential to alleviate some of the difficulty surrounding decisions about prostate cancer screening and subsequent decisions in the case of a positive PSA test result. However, being involved and making an adequate and informed decision requires recognition and incorporation of the information needs of patients. Only when the patient’s information needs are fully considered can the complex issues and controversies surrounding prostate cancer screening & treatment be efficiently addressed.
Without understanding the basic concepts and issues of prostate cancer and PCS, patients are not informed. Without being informed, patients cannot make rational decisions. The absence of rational decisions leads to inefficient and potentially hazardous outcomes.17 This roadmap provides a mechanism for both education and rational thought regarding an individual’s information needs regarding PCS, thereby improving the efficiency and quality of patient outcomes.
This conceptual framework map identifies and categorizes the varying levels of information and processes required to make adequate and informed decisions regarding PCS. The intent of this map is to facilitate successful participation in shared decision-making regarding PCS. As this project continues, and more medical encounters are analyzed, this map should be treated as an evolving tool which requires iterative application and modification. The application of the conceptual framework map developed in this study has the potential to improve the completeness and accuracy of the shared decision-making process.
Study limitations
This study included sixty-two African American and Caucasian males between the ages of 45 and 70. It is anticipated that the results may be different for other population groups which differ with regards to race, education and demographic location. However, the methods conducted in this study are generalizable and can be successfully used with other population groups. In addition, this conceputal map could be made generalizable by using it as a template for other health issues that involve identifying information needs of a specific population.
Acknowledgments
Reducing Health Disparities Through Informatics (RHeaDI)(T32NR007969)
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