Prostate Cancer 2004: Insights From National Disease Registries

In their article, Drs. Matthew Cooperberg, Sangtae Park, and Peter Carroll summarize four national registries that have studied risk migration, practice patterns, outcome predictions, and quality-of-life outcomes in prostate cancer. Each of these four large registries-the Prostate Cancer Outcomes Study (PCOS), the Department of Defense Center for Prostate Disease Research (CPDR), the Cancer of the Prostate Strategic Urologic Research Endeavor (CaPSURE), and the Shared Equal Access Regional Cancer Hospital (SEARCH)-has a particular strength that complements the others. As more patients enroll in these registries, researchers will gain greater insight into the patterns of care and clinical and health-related quality of life for diverse cohorts of prostate cancer patients. Every year, over 230,000 men are newly diagnosed with prostate cancer and face important treatment decisions.[ 1] As each treatment is associated with distinct side effects[2-12] and expected survival rates that are similar, health-related quality of life is an important factor to consider while making this decision. Moreover, prolonged emotional effects and possible problems with appetite, fatigue, cognitive function, and financial difficulties should be considered. With an ever-increasing number of treatment options, prostate cancer patients' concerns about possible treatment-related toxicities often influence the ultimate treatment decision. For this reason, comprehensive pictures of patterns of care, survival, and quality of life among prostate cancer patients are especially important. Distinct Patient Populations
Each of the large prostate cancer registries includes distinct patient populations and unique approaches. Although the SEARCH registry includes a large percentage of African-American men, all of its participants have undergone radical prostatectomy and the registry does not include prospective assessments of health-related quality-of-life data. The CPDR is the largest database and includes detailed clinical information from treating physicians. However, it too does not include patient-reported health-related quality-of-life data. In contrast, the PCOS registry does not contain information obtained from individual physicians, but it does include patient-reported health-related quality-of-life data from diverse cohorts of patients, including many who are diagnosed at later stages. As it represents a cross-sectional database, it does not include long-term followup information. Finally, the CaPSURE registry contains longitudinal information on patterns of care, clinical outcomes, and self-reported health-related quality-of-life data, but is limited by the inclusion of only a small percentage of prostate cancer patients who belong to racial or ethnic minorities. Cooperberg et al highlight important findings in the areas of clinical presentation, patterns of care, survival, and quality of life that can be obtained from registry studies and describe the advantages and limitations of each registry. They also outline strategies in which the registries can be used together to provide additional data and to supplement each registry's deficiencies. It should be noted, however, that additional, but smaller, prostate cancer registries exist, and that these registries can provide important information on traditionally hard-to-reach populations, including racial/ethnic minorities, persons of low socioeconomic status, and those with poor health literacy skills. Chicago Cohort
The Chicago Cancer of the Prostate Outcomes Study (Chicago CaPOS) is currently recruiting patients to a longitudinal health-related quality-of-life study being conducted at three equalaccess centers in Chicago-a Veterans Affairs hospital, a county hospital, and a private hospital with extensive outreach programs. Of the 205 patients currently enrolled, 70% are African- American, 61% are over the age of 65, 45% have less than 9th grade literacy levels, and 60% have annual incomes of less than $20,000. Diagnostic and staging information is collected from medical records at baseline, and treatment information is followed through periodic chart reviews. In addition, participants are interviewed with respect to health-related quality of life prior to the initiation of treatment and at 3- and 12-month follow-up, which allows for prospective assessments of health-related quality of life, treatments, and outcomes. Clinical presentation and patternsof- care findings from this cohort are similar to those reported by the four large registries. Almost half of the patients in recent years presented with early-stage and low-risk disease. Nonetheless, only 12% chose watchful waiting and 60% underwent a radical prostatectomy or external-beam irradiation. However, early findings from the cohort indicate that among a population characterized by low socioeconomic status and good access to health care, poor health literacy skills are an important and often overlooked factor to consider when identifying individuals who present with high prostatespecific antigen levels. Conclusions
With policymakers' current emphasis on cancer survivorship, longterm studies of prostate cancer patients are becoming increasingly important. Information obtained from the four large ongoing prostate cancer registries, supplemented by similar data elements from smaller cohorts of hardto- reach individuals with prostate cancer, can provide important insights. The alphabet soup of privately and publicly funded prostate cancer registries represents a unique national jewel that can assist in improving our understanding of prostate cancer survivorship.