Prostate Cancer Conference Report
Session 7: Communication

A fundamental purpose of health care communications is to provide adequate information to physicians and patients to enable them to make informed decisions. In this session, the participants addressed how best to communicate information about prostate cancer.

The group was asked to address issues about communication regarding prostate cancer in four areas—disease burden and risk, primary prevention, secondary prevention and treatment, and survivorship and quality of life and to make suggestions on what to communicate and how to communicate it.

This group gave priority to the following messages that should be communicated about prostate cancer.

• Prostate cancer is a serious and important health issue.
• Considerable scientific uncertainty exists regarding screening and treatment issues.
• Many decision points and options exist for screening and treatment.
• Clinical trials under way now may answer many questions.
• Additional resources for health care providers and patients are needed to assist in decision making.
• Men have a right to be educated and informed about prostate cancer issues, including screening.
• Men have a right to make choices on these issues.
• Men should talk with their providers about prostate cancer issues, including personal risk.
• Providers need information, skills, and resources to provide counsel for patients.

The group identified several needs for health care providers and the public. To meet those needs, the public health community should:

Health Care Providers

• Provide validated tools to convey the risks and benefits of prostate cancer screening and treatment.
• Train clinicians to be able to educate patients that decision making must be individualized and that there is no right or wrong approach to prostate cancer screening and treatment.

The Public

• Provide ways to help men and their families better understand shared decision making.
• Provide ways for men to participate in shared decision making, such as providing a list of questions to discuss with their health care providers.
• Develop tools to help men interpret prostate cancer risk.
• Help men to understand the potential trade-off between quality of life and lifespan of prostate cancer treatment.
• Provide Web-based aids for decision making related to screening and treatment.

In addition, the public health community also needs to:

• Determine, through the use of public opinion polls, what the public knows about prostate cancer, including attitudes and behaviors.
• Convey to the public what is known regarding the risks and benefits of prostate cancer screening and treatment.

Although participants did not reach consensus on the specific messages that should be delivered, they identified health care providers and the public as the main audiences to whom public health agencies should communicate. The group noted that different messages must be crafted for target audiences. The participants agreed that policy makers and the media should be as well educated about prostate cancer as they are about breast cancer. To accomplish this goal, the public health community needs to develop educational materials for the media. One of the best ways to communicate with the public and policy makers is through the media.

The field of prostate cancer screening and treatment is evolving and the messages may change as new information becomes available. The group suggested that the public health community should test the effect of different messages to determine their impact and how people make decisions based upon the information provided.

Participants suggested the public health community develop a comprehensive communication plan that identifies target populations, specific messages, strategies, and methods of delivery. The messages need to be clear, straightforward, and basic, especially for lower income, urban populations. Because the field of prostate cancer screening and treatment is fraught with uncertainty, the participants discussed the importance of communicating this uncertainty to the public. They agreed that different messages should be crafted for different groups. Patients need to know that there is no single right answer.

In addition to identifying target groups and developing messages appropriate for those groups, public health researchers need to identify what specific actions those groups should take, e.g., whether they should be screened or not and whether they should seek aggressive or more conservative treatment.

Disease Burden and Risk

The group noted that the public health community should communicate to the public that the risk of prostate cancer—approximately 1 in 10—is nearly the same as that for breast cancer. Although the highest risk group is older men, the participants suggested that one goal of communication should be to dispel the myth that prostate cancer is a benign disease that only older men develop. They discussed the importance of targeting messages to the highest risk groups, including African-American men and men with a family history of the disease, and those who may be the most likely to benefit from treatment, middle-aged men or men without a high degree of comorbidity.

Because a significant proportion of prostate cancer is undiagnosed, the participants agreed that defining disease burden is difficult and communicating about it is complicated. The public health community needs to communicate the risk of various treatment options, as well as the risk of nontreatment.

Lack of knowledge of the risk factors for prostate cancer makes it difficult to craft messages clearly. The group discussed determining the best way to frame messages and whether these messages should present specific information for men in different age groups or should communicate overall risk. Public health officials could provide a list of questions for patients to ask physicians about prostate cancer screening and the risks and benefits of treatment. The group suggested that to develop and deliver these messages, public health agencies should work in concert with state health departments, ACS, the American Urological Association (AUA), and other organizations.

Primary Prevention

Information on prevention of prostate cancer appears to be lacking. Whether diet, exercise, and nutritional supplements can lower the risk of developing prostate cancer is unknown. Until study results are available, communication in this area will be difficult. In general, following a healthy lifestyle that includes eating fruits and vegetables, avoiding fats, getting adequate exercise, and remaining slim appears to be advisable, even if these factors do not specifically prevent prostate cancer. The message in this area seems to be that the risk factors for prostate cancer are unknown at this time.

Participants made several other suggestions. The public health community needs to be a leader in approaching policy makers about legislation on men's health issues. Public health organizations should request funding for increased surveillance and for increasing the collection of behavioral and psychosocial data to determine the factors that might be involved in primary prevention. Identifying and developing relationships with people of influence who can communicate with and influence policy makers is important.

Secondary Prevention and Treatment

The group suggested that the CDC needs to educate health care providers that no right or wrong answer exists regarding prostate cancer screening and treatment. The public health community can help physicians develop methods to communicate this uncertainty to patients.

Participants suggested several points should be included in decision aids to help clinicians help their patients decide about prostate cancer screening. PSA screening is approved by the U.S. Food and Drug Administration and paid for by Medicare. This should be communicated to providers and patients. Risk profiles could be developed to help men assess their risk of developing prostate cancer. Patients need to be informed that if they choose to have a PSA test and the test is positive, they will have to make certain decisions, including whether to have a biopsy, whether to be treated if the biopsy is positive, and the type of treatment they want. Patients need to be made aware of the risks and benefits of the various treatment options. Some patients will choose not to be treated, or screened.

The participants discussed the importance of clinical trials and agreed that the public health community could communicate the need for physicians to participate in clinical trials. However, barriers to participation exist. Physicians are busy and gain no immediate benefit. The group noted that more could be done to help physicians realize that scientific advances can be made more readily if more physicians participate in clinical trials. Barriers also exist in the minds of the patients who may be uncomfortable being part of an experiment for the benefit of others.

Survivorship and Quality of Life

The group discussed the need for messages that convey the information that prostate cancer is not always a death sentence and that survivorship is generally good. However, nearly 40,000 men die each year of prostate cancer, so the message should not be that prostate cancer can be ignored. Men also need to be aware of the risks of treatment and of nontreatment.

Another message is that the risk of mortality from prostate cancer is higher among African-American men.

Participants suggested that to better understand the impact of the lack of health care, public health officials might consider documenting differences in quality of life and survivorship between men who have access to health care services and those who do not.

The participants also discussed the importance of considering the issue of quality of life rather than just survival. For example, quality of life tradeoffs may be required for longer survival. A recent study showed that 80 percent of men were impotent 2 years after prostectomy and that about 50 percent of men were impotent after radiation. Incontinence after treatment is another consideration. Rates of these side effects vary among populations and clinical practices. These rates might be improved if treatments were performed at centers with a high volume of treatment of prostate cancer patients. The group also pointed out that information about alternative treatments, long-term complications, and availability of resources and follow-up, need to be communicated.

To address survivorship, the participants suggested that public health officials partner with organizations such as the National Coalition for Survivorship. Spouses of survivors need support as well. The public health field should consider communicating with spouses of prostate cancer patients about quality of life and coping strategies and offer information on resources and support groups.

Highlighted Suggestions

Disease Burden and Risk

1. Communicate to the public that prostate cancer is a serious and important health issue that men have a right to know about.



2. Provide men with information, including Web-based materials, to allow them to better understand their risk. Encourage men to talk to their health care providers about their prostate cancer risk.



3. Provide practitioners with information, skills, and resources, such as validated tools to convey risks and disease burden that can be used to counsel patients.



4. Base communication methods on current research on what the public and providers know about disease burden and risk.

Primary Prevention

1. Provide information on a prudent lifestyle that includes a healthy diet and physical activity.



2. Provide information on the effectiveness or ineffectiveness of alternative prevention measures, such as the use of herbals.

Secondary Prevention and Treatment

1. Communicate to the public about the considerable scientific uncertainty about the potential harms and benefits of screening and treatment for prostate cancer, the potential tradeoffs between quality of life and life span related to screening and treatment, and the ongoing clinical trials that will answer many questions in the future.



2. Provide practitioners with information, skills, and resources (validated tools) to counsel patients and assist in decision making.



3. Educate men about the issues of prostate cancer screening, provide information on the risks and benefits, and provide decision aids, including tools on the Internet.



4. Help members of the public to better understand shared decision making and equip them with tools, such as questions to ask health care providers, to participate in shared decision making. Men should know and understand that there is no right or wrong answer to questions on prostate cancer screening and treatment. Encourage men to talk to their providers about screening and treatments.



5. Base communications methods and messages on current research on what the public and providers know about screening and treatment of prostate cancer.

Survivorship and Quality of Life

1. Communicate to the public about the considerable scientific uncertainty about the potential hazards and benefits of treatments for prostate cancer and the potential trade-offs between quality of life and life span.



2. Provide information on alternative and complementary medicines.

Session Participants

Carol Moody Becker, U.S. Conference of Mayors
Thomas M. Bruckman, American Foundation for Urologic Disease
Arnold D. Bullock, Washington University School of Medicine
Ralph Coates, Centers for Disease Control and Prevention
E. David Crawford, University of Colorado Health Science Center
Lesley F. Degner, University of Manitoba
Kenneth B. Durgans, Xavier University
Ann Barry Flood, Dartmouth Medical School
Robert M. Hamm, University of Oklahoma Health Sciences Center
Jerianne Heimendinger, American Medical Center Cancer Research Center
Gerald P. Hoke, Columbia University
Elmer E. Huerta, Washington Hospital Center
Ruth Jensen, Northwest Portland Area Indian Health Board
Richard C. Johnson, U.S. Conference of Mayors
Cynthia M. Jorgensen, Centers for Disease Control and Prevention
Neal D. Kohatsu, American College of Preventive Medicine
Beverly Reddick-Jenkins, Colorado Department of Public Health and Environment
Juanita Salinas, Texas Department of Health
Fritz H. Schröder, Erasmus Medical Center
Tracie C. Snitker, Men's Health Network
Kathryn L. Taylor, Georgetown University
Starlett D. Temple, American Cancer Society
Robert J. Volk, Baylor College of Medicine
Hannah K. Weir, Centers for Disease Control and Prevention
Andrew Wolf, University of Virginia Health System
Walter Young, Advanced Health Directions
Facilitator—Lela Baughman
Writer and Editor—Louann Murray, Skyline Communications
Reporter—Neal D. Kohatsu, American College of Preventive Medicine