Helping Low-Literacy Prostate Cancer Patients Choose Rx

July 1, 2002

Prostate cancer represents the most common neoplasm and second leading cause of cancer mortality among men in the United States. There are 189,000 new cases of prostate cancer and 32,000 deaths resulting from prostate cancer expected in 2002.[1]

Prostate cancer represents the most common neoplasm and second leading cause of cancer mortality among men in the United States. There are 189,000 new cases of prostate cancer and 32,000 deaths resulting from prostate cancer expected in 2002.[1]

There is no particular prostate cancer treatment that is clearly superior with respect to survival. As a result, patients and physicians should consider the quality of life implications of each treatment during the decision-making process.

Previous studies have suggested that physicians may experience difficulty incorporating patient preferences into clinical decisions.

First, physicians and patients may have different ideas with respect to the goals of treatment. Crawford found that patients rated preservation of quality of life (45%) and extension of life (29%) as the most important treatment goals, while urologists cited treatment efficacy (85%) as the primary consideration in decision-making, ranking quality of life concerns as secondary.[2] In the context of patient-physician communication, Miles found that a majority of patients did not recall discussions with their treating physicians about issues such as expectant management, patient preferences, and treatment-related side effects.[3]

These studies suggest that physician understanding of patient concerns and patient participation in the decision-making process should be addressed.

Works in Progress

Although patient involvement in the treatment decision-making process has been encouraged, shared decision-making between patients and their physicians and the programs used to increase patient participation remain works in progress. A wide variety of shared decision-making programs, including videos, brochures, and CD-ROMs, have been developed to provide patients with information about prostate cancer and the risks and benefits associated with each treatment option.

While videos and brochures have the advantages of being affordable, easy-to-use, and widely available, these programs offer a "one-size-fits-all" approach to shared decision-making. In contrast, interactive CD-ROMs have the ability to present information specific to each patient. For example, the information presented to a patient who is 78 years old, has a low-grade tumor, and has moderate comorbidities will differ from that presented to a patient who is 50 years old, has a high-grade tumor, and has no other serious coexisting health problems.

Wagner and Barry have both evaluated the validity of interactive CD-ROM shared decision-making programs.[4,5]. Their work indicated that the use of the CD-ROM program resulted in higher levels of patient satisfaction and improved communication between the physician and patient.

Although shared decision-making programs have the potential to increase patient participation in the decision-making process, there remains little information on the efficacy of shared decision-making programs for patients with low health literacy skills.

Patients with low health literacy often have limited knowledge about prostate cancer and available treatments. Of 212 prostate cancer patients who received treatment at Veteran’s Administration (VA) Medical Centers, 31% had literacy levels equal to or below the sixth grade level.[6] Thus, low health literacy may be one of the most important factors impeding patients, especially veterans, from participating in the treatment decision-making process.[6-8]

We sought to assess the efficacy of an interactive CD-ROM shared decision-making program among newly diagnosed prostate cancer patients treated in a VA medical center.

The CD-ROM, designed for a general audience of prostate cancer patients, included textual descriptions about the various stages of prostate cancer and associated treatments, video presentations by physicians, clips showing patients receiving treatment, and testimonials by patients and their families about their experiences with the disease and the different treatments they received.

A research assistant was available to assist patients and answer any questions they might have while they were using the CD-ROM.

Upon completion of the CD-ROM program, we assessed patient knowledge of prostate cancer with a 23-item Prostate Cancer Knowledge Questionnaire. Patients were also questioned about their satisfaction with the CD-ROM, their treatment preference, and the likelihood of following their treatment preference.

Patients’ health literacy was assessed using the Rapid Estimate of Adult Literacy in Medicine (REALM), which measures the patients’ ability to pronounce 66 commonly used medical words.

We evaluated (1) the knowledge, level of satisfaction, and treatment preferences and intentions of the men with newly diagnosed prostate cancer, and (2) the relationship between prostate cancer knowledge and health literacy.

The pilot program included 30 patients; 77% had graduated from high school, while the mean literacy level was between the 7th and 8th grade. Half of the patients were white, and 43% were black; the mean age was 67 years.

Study Results

The scores obtained from the Prostate Cancer Knowledge Questionnaire used in our study indicated that patients’ knowledge of prostate cancer was correlated with their level of health literacy. Participants who graduated from high school scored higher than patients who did not. Race, marital status, and age were not associated with prostate cancer knowledge.

The results of this shared decision-making effort corroborate work reported previously. These studies indicated that low health literacy is often associated with low knowledge about disease and low comprehension of written materials,[9] and that low scores on knowledge questionnaires given following a shared decision-making intervention are associated with low literacy.[10]

Furthermore, the data suggest that patients with low literacy skills may face significant barriers to participating in the treatment decision-making process in an informed manner.

Most patients responded favorably with respect to their level of satisfaction with the CD-ROM shared decision-making program. More than three quarters rated the information presented as "very satisfactory" (highest possible rating). However, their confidence in the information presented in the CD-ROM did not translate into participation in the medical decision-making process.

After completing the CD-ROM tool, 21 of the 30 patients selected a treatment. Less than half of these patients stated they were "very likely" to follow their treatment preference, while 42.9% thought they were only "somewhat likely" to stick with their treatment preference. Of these 21 participants, two thirds went on to receive different treatments than those they said they preferred following the CD-ROM intervention.

There are several possible explanations as to why these patients did not receive the treatment they said they preferred. It is possible that patients’ low health literacy skills limited their knowledge and, consequently, their belief in their ability to participate in the medical decision-making process with their physician.

Even if patients’ knowledge improved after the intervention, their knowledge may still not have been enough to enable them to take part in the decision-making process in an informed manner. Moreover, patients with low health literacy may not be accustomed to expressing their preferences and might be less likely to do so even if they have the necessary background information.


In the setting of prostate cancer, medical decision-making requires knowledge not only of the possible treatments and their potential outcomes but also of patients’ preferences for these outcomes.

To make appropriate decisions regarding their treatment, patients must possess adequate information regarding their illness and the available therapeutic options. Low health literacy levels may hinder patients’ understanding of the information they are presented in shared decision-making programs and, ultimately, may limit their ability to interact with the treating physician.

To increase patient participation in medical decision-making, we should specifically tailor programs to low literacy populations. More extensive studies of larger patient cohorts are needed to examine patient comprehension of interactive shared decision-making programs across literacy levels. These future studies should attempt to present information in ways that are sensitive and appealing to their target populations.


1. American Cancer Society: Facts and Figures 2002. Atlanta, Georgia, American Cancer Society, Inc., 2002.

2. Crawford DE, Bennett CL, Nelson NS, et al: Comparison of perspectives on prostate cancer: Analysis of survey data. Urology 50:366-372, 1997.

3. Miles BJ, Giesler B, Kattan MW: Recall and attitudes in patients with prostate cancer. Urology 53:169-174, 1999.

4. Wagner EH, Barrett P, Barry MK, et al: The effects of shared decision-making program on rates of surgery for benign prostatic hyperplasia: Pilot results. Med Care 33:765-770, 1995.

5. Barry MJ, Fowler FJ, Mulley AG, et al: Patient reaction to a program designed to facilitate participation in treatment decisions for benign prostatic hyperplasia. Med Care 33:771-782, 1995.

6. Bennett CL, Ferreira MR, Davis TC, et al: Relation between literacy, race, and stage of presentation among low-income patients with prostate cancer. J Clin Oncol 16:3101-3104, 1998.

7. Kim SP, Bennett CL, Chan C, et al: QOL outcomes research in prostate cancer patients with low socioeconomic status. Oncology 13:823-832, 1999.

8. Kirsch I, Jungeblut A, Jenkins L, et al: Adult literacy in America: A first look at the results of the National Adult Literacy Survey. Washington, DC, National Center for Education Statistics, U.S. Department of Education, 1993.

9. Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association: Health literacy: Report of the Council on Scientific Affairs. JAMA 281:552-557, 1999.

10. Schapira MM, Meade C, Nattinger AB: Enhanced decision-making: The use of a videotape decision aid for patients with prostate cancer. Patient Education and Counseling 30:119-127, 1997.

Mr. Nathan and Ms. Newlin are project managers, NorthwesternUniversity Medical School. Dr. Bennett is professor of medicine, NorthwesternUniversity Medical School, Robert H. Lurie Comprehensive Cancer Center, anddirector of HSR&D, VA Chicago Health Care System—Lakeside Division.