Prostate Cancer Conference Report
Session 8: Programs and Services

In this session, the participants considered public health programs and services that could be implemented to address issues of disease burden and risk, primary prevention, secondary prevention, and survivorship and quality of life, in particular programs and services, as well as communication and health education. Other topics included in this discussion were problems of underserved populations and the infrastructure and resources that the public health community needs to implement prostate cancer programs and services. Participants discussed the need to focus on public health programs and services separate from research, surveillance, and communications.

The participants discussed environmental factors, public health policies, access to health services, and insurance coverage. Public health was considered in a broad sense to include state public health agencies, CDC and other government institutions, voluntary organizations, and partnerships with public health organizations.

For each topic, e.g., disease burden, topics presented here are listed in the order of their importance as judged by group participants.

Disease Burden and Risk

Participants discussed a wide range of suggestions:

1. Analyze screening outcomes.

The core of the public health approach to disease burden and risk is to understand and communicate information about burden and risk. Accomplishing this communication goal requires surveillance, research, and an accurate understanding of disease burden. Participants noted that public health officials can do very little until a message to the public can be crafted to address the effectiveness of screening and treatment.

One of the factors that must be understood and communicated is the expected mortality risk of men who are diagnosed with prostate cancer. Risks are usually communicated in terms of 5-year survival, but a recent study described the fallacy of using 5-year survival rates when diseases are being detected earlier. For example, recent 5-year survival rates of men with prostate cancer have risen from 50 to 90 percent. Although this increase implies that practitioners are "doing something right," this may be misleading if 5-year rates do not correlate with actual mortality rates.

Participants discussed PSA testing on both incidence and survival rates. The incidence is increased because PSA testing may identify more latent cases that might not have otherwise been identified and treated. Survival rates increase because PSA testing can result in earlier detection, which lengthens the time from diagnosis to death. Follow- up of patients for a longer period of time will be necessary to determine the true rate of survival.

The group discussed the Cochrane Collaboration, a group that conducts systematic reviews, primarily of randomized trials, to assess the risks and benefits of health care interventions and provide a body of evidence. This Collaboration also provides a registry of all randomized trials conducted for prostate cancer. A key issue for prostate cancer is to define evidence and uncertainties, as the Cochrane Collaboration does.

2. Establish better communication between public health and grassroots organizations.

The group discussed communications between public health agencies, including CDC, and grassroots organizations. Grassroots organizations, such as small volunteer groups, usually have few resources but are well positioned for disseminating messages. At present, CDC has not worked closely with these groups.

The Florida Prostate Cancer Task Force is an example of how volunteer groups can influence prostate cancer issues. This task force was created by patient advocacy groups to demand that the state examine current practices and develop a comprehensive plan for addressing prostate cancer in the state. The Florida Health Department has not identified prostate cancer as an issue of concern, so the task force is pressuring the legislature. The creation of this task force was driven by the patient community, which could have benefited from assistance by public health agencies. The CDC could encourage state health departments to work with similar volunteer groups. One group which reviewed NCI activities concluded that the organization does not have a clear picture of what is being done for prostate cancer across the country.

Participants noted that about 10 to 15 years ago, the Surgeon General conducted a study to determine the value of self-help or support groups for the health and survival of cancer patients. The investigators found that regardless of the type of cancer, belonging to a group and talking to others with common problems alleviated the mental stress of the patient's condition, and made treatments more effective, and resulted in longer survival. Groups such as Us TOO International receive a great deal of support from a variety of sources, including commercial organizations. Group participants noted that public health agencies should consider becoming more proactive in supporting these groups or in working with them to train others to reach more prostate cancer patients. This approach is highly cost effective because the groups are led by unpaid volunteers.

The group discussed issues public health and voluntary groups should include in communications. Men who select watchful waiting as their treatment choice may not be comfortable in self-help groups because of the fear that others may try to convince them that they have made the wrong decision or that they are being too passive. Men who choose to not be screened are also unlikely to join a prostate cancer support group because of their advocacy of screening. Both of these groups of men need to be included in the public health communication process, because current self-help groups are not likely to reach them or include them.

The Massachusetts Public Health Department funds support groups for all men who have prostate cancer and their families regardless of treatment choice. For men without cancer, men's health events or open forums are organized according to the particular needs of the community. Topics for discussion may include substance abuse, cardiovascular disease, or issues related to prostate health. Funding is in the form of yearly mini grants to a network of support groups. The groups respond to a request for proposals (RFP) every year and explain what they will do with the grant. Selections are based on the RFP and the location; the aim is to spread the grants among communities.

The group discussed another suggestion that support groups collaborate and increase communication among themselves to discuss effective strategies.

3. Promote the sharing of information across states.

A participant asked what CDC was doing in the area of prostate cancer and how much resources were being providing to communities to help accomplish their goals. Congress has provided the CDC with approximately $9 million for prostate cancer work to help develop the prostate cancer case registry and to build a strong science base by supporting specific research programs and surveillance activities. Few resources are available yet for a state program but information on infrastructure at the state level is being collected. Six comprehensive cancer control programs are being funded on a competitive basis.

Resources are not sufficient to fund all of the states. Funding of approximately $350,000 per year is provided to each program to help build infrastructure.

Participants noted that Massachusetts may be a model state for addressing the prostate cancer issue. Sharing the Massachusetts model with other states would be valuable. Unfortunately, many other states do not have the resources and plans to put together symposia or other kinds of programs. Most know little about what occurs in other states and what does and does not work. Participants suggested that the CDC could serve as a catalyst for sharing this kind of information.

4. Fix problems with coding of death certificates issue.

Participants discussed evidence indicating that miscoding is a problem with death certificates. Men who receive early intervention for prostate cancer are less likely to have physicians list prostate cancer as cause of death than are men who were not tested and men who were treated with watchful waiting. This coding bias can be as much as 20 percent. Many physicians have not been trained in how to complete death certificates. This biases mortality statistics and survival rates.

5. Conduct surveillance of subpopulations.

New tools are needed to track trends in subpopulations, and the cancer registries need to be improved so that they provide information on specific subpopulations.

Primary Prevention

Participants discussed a number of suggestions.

1. Determine the impact of communication at the provider level.

Participants suggested that the public health agencies should consider supporting public symposia for prostate cancer survivors and physicians to present information on risk-benefit assessment and to help extend volunteer group efforts beyond the groups' own neighborhoods. Some of these symposia may be specialized, but most would provide general information. Massachusetts is a model state that mandates the support of prostate cancer research and yearly information symposia. The CDC might help states seek legislation to encourage programs like those of Massachusetts.

Public health officials might also play a role in fostering cooperation between the grassroots organizations and health care providers. There has been some concern that the two groups may sometimes have an adversarial relationship. Providers may claim that support groups are saying the wrong things and are not helpful. Health care providers often do not see men with prostate cancer until they are seriously ill, when wrong decisions may be made because they are based on assumptions. Sometimes, health care providers seem to convey the idea that survival is not an option, whereas support groups provide evidence that men with prostate cancer can survive. Support groups can be of service to physicians who lack the time to discuss prostate cancer issues with patients.

2. Encourage men at high risk to participate in clinical trials.

The group discussed the possibility that local health departments could encourage men at high risk to participate in clinical trials that are testing chemoprevention for prostate cancer or that are investigating whether dietary interventions are useful. Public health organizations could fund research on why people and physicians do not participate in these trials.

3. Integrate prostate cancer into other public health prevention programs.

Dietary changes to prevent prostate cancer should be investigated as part of public health research on diet and nutrition.

4. Develop messages about evidence and uncertainty concerning prostate cancer risk.

Prostate cancer should be placed in the context of other risks. Putting prostate cancer risk in perspective by comparing it with environmental risks may be useful. Multiple risks exist and may include genetic, environmental, and behavioral risks. It is often difficult for an individual to understand all these risks.

A tremendous amount of uncertainty exists around the prostate screening and treatment. Some participants noted that a principle that has been applied to carcinogens and other health risks is that if an intervention is believed to be beneficial, it will be used regardless of the scientific evidence. CDC can help by taking a leadership role in evaluating the evidence about the effectiveness of prostate cancer screening and treatment and formulating messages regarding the evidence and uncertainties.

A Madison Avenue-type marketing organization might help craft and promote messages with the understanding that the messages must be based on the available evidence.

Public health agencies use experts in health communications development and should consider their involvement in promoting, and possibly aiding in crafting, prostate cancer messages.

A Web-based information clearinghouse might be created so that state health departments, for example, could communicate with one another to learn what works and what does not, to communicate uncertainty, or to find available tools. A prostate cancer-specific tool, similar to the colorectal cancer slide program that provides disease-specific information to physicians and patients, would be useful.

Participants discussed the possibility that part of the prostate cancer risk messages could be comparative risk assessments or opportunity-cost analyses. Every dollar spent on prostate cancer control is one not spent on lung cancer control, colorectal cancer screening, etc. The message should include the fact that screening should only be done in the context of primary care and that it is not for everyone.

5. Encourage disease-risk counseling.

Participants noted that disease risk counselors could help physicians discuss prostate cancer risk with their patients. This role would be similar to the role of genetic counselors in discussing breast cancer genetic susceptibility testing or counselors for HIV risk. Physicians often have no time to discuss risk with their patients. The additional burden to the physician in the case of prostate cancer is to determine the kind of information needed. Programs that empower the physician by providing accurate knowledge about prostate cancer risk would also be useful.

Participants discussed the possibility that public health professionals may need to focus prostate cancer education on low-risk groups, as well as high-risk groups. Low-risk groups should be included because these population groups are unlikely to benefit from screening and treatment. These may include older men in poor health or race/ethnic groups at low risk of prostate cancer. Insurance companies often make the mistake of screening 80-year-old men for prostate cancer when they are more likely to die of other causes. One Veterans Administration study found that men who were older than 70 years and in fair-to-poor health were just as likely to be screened for prostate cancer as younger healthy men. Both the public and providers need to be educated about age- and health status-related differences in disease risk.

The Veterans Administration practice guideline recommends that all men between the ages of 50 and 70 years be counseled about risks and benefits. On average about 40 to 50 percent of men are counseled. Yet, many men who have been tested are not aware that they have been tested.

6. Provide prostate cancer education as a subcategory of prostate health or of men's health.

The group discussed prostate health in general. The men's health program has been driven by prostate cancer, but information is often lost by focusing too much attention on prostate cancer. The issue is really total health. Community health programs focusing on prostate cancer do not engage people's attention. A focus on prostate health and overall health encourages engagement. Most men know little about the prostate gland. Education programs could be organized around symptoms, such as urgency and frequency of urination. Patients would come in to deal with symptoms and learn about prostate cancer at the same time.

Although prostate cancer is important, men die more often of heart disease. One successful, well-attended program, Men's Sexual Health Issues, covered heart disease, colon cancer, and other topics besides prostate cancer. The military once provided statistics on men's health but has not done so recently. CDC and other public health agencies could participate in collecting and presenting prostate cancer data under the broad issue of men's health.

7. If a state was given $50 million to run a prostate program, what would it look like?

Participants discussed the possibility that a population-based study be conducted to determine how to reach the greatest number of people. Different subgroups need different approaches, and programs could be organized to make education available, perhaps in the form of pamphlets directed to specific issues. An appeal to spouses, as well as to men, would probably be effective. The topic of prostate cancer could be presented as part of other men's health issues because it is easier to talk about prostate health than prostate cancer.

The group discussed a suggestion to set up screening and prostate health programs similar to the language of legislation proposed in the U.S. Senate. But, a program that provides only screening is of little use. A few years ago, the Michigan Department of Health's budget provided money to be used specifically for a prostate cancer screening program. The program ended up as a demonstration program that was not widespread or research-focused.

Participants noted that prostate cancer may be overemphasized to the disadvantage of more important public health issues for which proven effective interventions exist. Smoking cessation efforts might need funding more than prostate cancer, because such funding would save more lives. Pancreatic and esophageal cancer can kill, and yet screening is not conducted for these cancers, perhaps because no good disease markers exist. Prostate cancer is the second leading cause of cancer deaths represents a small proportion of the major causes of death.

Participants noted that one of the most important questions to be answered is how to distinguish benign or latent forms of prostate cancer from malignant prostate cancer. Autopsies indicate that two thirds of Americans have latent or occult prostate cancer at the time of death. The problem of distinguishing benign from malignant disease is a scientific issue and which may not come under the purview of public health agencies like CDC. NCI should expand its program on prostate cancer biology to address this issue. CDC does have a role in communicating the risks and potential downside of screening.

Public health officials should focus on determining how to convey the message of uncertainty once it is clear what that message should be. At the present time, not enough evidence exists to recommend avoiding screening, but the scientific community has not yet identified clear markers for prostate cancer.

Secondary Prevention and Risk

The group identified several suggestions for secondary prevention.

1. Fully assess the frequency of adverse outcomes.

Participants noted that public health researchers should take greater interest in identifying the real frequency of adverse events, such as incontinence and impotence. The existing data are believed to be extremely unreliable. The questions need to be addressed to the patient to obtain a reasonably accurate answer, but patients often lie to their physicians about these problems because of the associated shame.

2. Assess the morbidity and quality of life measurements.

The long-term consequences of hormonal therapy should be investigated. Psychosocial issues are being addressed by a few studies. One question that occurs frequently is how men rate the value of survival versus quality of life.

3. Revise the current screening and treatment recommendations.

One role of the public health field in secondary prevention is in the development and promulgation of guidelines and encouraging implementation and evaluation. In the absence of evidence-based guidelines, consensus-based guidelines might be developed. However, it is not clear how meaningful consensus guidelines would be developed for prostate cancer. The conundrum is that randomized trial results were not conducted before screening for PSA began. The issue has become highly emotional and politicized, but the science is not being allowed to break through and provide guidance. Although CDC might fund research on secondary prevention and promote interim consensus guidelines, it might not want to be in the guideline business, because other federal agencies have that responsibility.

The group noted that many men with prostate cancer are being treated with surgery and radiation therapy whether or not there is agreement on effectiveness. Public health organizations could conduct surveillance studies of prostate cancer treatment practices. Ways may exist to selectively target patients with localized early disease to prevent disease progression, but how these patients should be monitored is not clear.

Systematic reviews have been useful for analyzing the effectiveness of hormonal and immunosuppression therapy. A large body of evidence exists on advanced prostate cancer. The group suggested that this information needs to be communicated to patients and providers, and public health could help assemble this information. Others suggested that the public health emphasis could be on understanding the complexities involved in screening and treatment and creating a decision making process to determine the best route.

4. Develop better methods to more accurately assess the causes of death.

In most cases, the death certificate is written on the day of death, without performance of an autopsy. In one case, prostate cancer had metastasized to the liver, and the cause of death was listed as liver cancer. Better methods are needed to determine and to code the cause of death.

Survivorship and Quality of Life

Prostate cancer screening may save lives, lead to unnecessary treatment and treatment-related morbidities, or both. Research and surveillance involving prostate cancer screening and its outcomes are needed to address these issues. However, screening practices in communities may not follow public health recommendations or wait for scientific evidence.

Highlighted Suggestions

Disease Burden and Risk

1. Public health organizations, including CDC, should collaborate with and support prostate cancer-related self-help groups, following the lead of the Massachusetts Department of Health, by developing community training materials; training individuals, including prostate cancer survivors, supporting self-help groups; facilitating community forums; and holding symposia.



2. Provide better tools for communicating the uncertainties about prostate cancer screening.

Primary Prevention

1. Implement programs to encourage men at high risk of prostate cancer to participate in primary prevention studies, such as those on selenium and vitamin E.



2. Integrate prostate cancer into other chronic disease prevention programs, such as prostate health programs or men's health programs.

Secondary Prevention and Treatment

1. Conduct follow-up studies of men who have been screened for prostate cancer.



2. Perform studies to evaluate treatment practices to include what is being done and how to measure outcomes.

Survivorship and Quality of Life

1. Conduct research to more fully and carefully assess frequencies of adverse outcomes in men treated for prostate cancer.



2. Perform research on the validity of death certificates in reflecting the true cause of death.



3. Assess morbidity measures, improve quality of life measures, and ensure consistent use of measures across studies.

Session Participants

Alfred O. Berg, University of Washington
Cynthia L. Boddie-Willis, Massachusetts Department of Public Health
David E. Bourne, Arkansas Department of Health
Kevin Brady, Centers for Disease Control and Prevention
Margaret Winifred Brome, Centers for Disease Control and Prevention
Durado Brooks, American Cancer Society
Carol A. Callaghan, Michigan Department of Community Health
Steven B. Clauser, Health Care Financing Administration
Paul A. Godley, University of North Carolina, Chapel Hill
Nancy C. Lee, Centers for Disease Control and Prevention
Leslie Levin, Ontario Ministry of Health and Long-term Care Cancer Services
Marcus H. Loo, Cornell University
Timothy J. Moore, PHS Health Plans, Inc.
Linda C. Nebeling, National Cancer Institute
Henry A. Porterfield, Us TOO International
Philip C. Prorock, National Cancer Institute
Karen M. Richard, Centers for Disease Control and Prevention
Robert J. Samuels, Florida Cancer Education Network
Grant N. Stemmerman, University of Cincinnati
Flora A. Ukoli, Howard University Cancer Center
James E. Williams, Jr., Us TOO International
Timothy J. Wilt, Veterans Administration Medical Center
Richard Wimberley, Michigan Public Health Institute
Facilitator—Robert Kingon
Writer and editor—Diane Etchison
Reporter—James Williams, Jr., Us TOO International