Prostate Cancer 2004: Insights From National Disease Registries

September 1, 2004

In their article, Drs. Matthew Cooperberg,Sangtae Park, and PeterCarroll summarize four nationalregistries that have studied risk migration,practice patterns, outcomepredictions, and quality-of-life outcomesin prostate cancer. Each of thesefour large registries-the Prostate CancerOutcomes Study (PCOS), the Departmentof Defense Center for ProstateDisease Research (CPDR), the Cancerof the Prostate Strategic Urologic ResearchEndeavor (CaPSURE), and theShared Equal Access Regional CancerHospital (SEARCH)-has a particularstrength that complements theothers. As more patients enroll in theseregistries, researchers will gain greaterinsight into the patterns of care andclinical and health-related quality oflife for diverse cohorts of prostate cancerpatients.

In their article, Drs. Matthew Cooperberg,Sangtae Park, and PeterCarroll summarize four nationalregistries that have studied risk migration,practice patterns, outcomepredictions, and quality-of-life outcomesin prostate cancer. Each of thesefour large registries-the Prostate CancerOutcomes Study (PCOS), the Departmentof Defense Center for ProstateDisease Research (CPDR), the Cancerof the Prostate Strategic Urologic ResearchEndeavor (CaPSURE), and theShared Equal Access Regional CancerHospital (SEARCH)-has a particularstrength that complements theothers. As more patients enroll in theseregistries, researchers will gain greaterinsight into the patterns of care andclinical and health-related quality oflife for diverse cohorts of prostate cancerpatients.Every year, over 230,000 men arenewly diagnosed with prostate cancerand face important treatment decisions.[1] As each treatment is associatedwith distinct side effects[2-12]and expected survival rates that aresimilar, health-related quality of lifeis an important factor to consider whilemaking this decision. Moreover, prolongedemotional effects and possible problems with appetite, fatigue, cognitivefunction, and financial difficultiesshould be considered. With anever-increasing number of treatmentoptions, prostate cancer patients' concernsabout possible treatment-relatedtoxicities often influence the ultimatetreatment decision. For this reason,comprehensive pictures of patterns ofcare, survival, and quality of lifeamong prostate cancer patients areespecially important.Distinct Patient Populations
Each of the large prostate cancerregistries includes distinct patient populationsand unique approaches. Althoughthe SEARCH registry includesa large percentage of African-Americanmen, all of its participants haveundergone radical prostatectomy andthe registry does not include prospectiveassessments of health-relatedquality-of-life data. The CPDR is thelargest database and includes detailedclinical information from treating physicians.However, it too does not includepatient-reported health-relatedquality-of-life data.In contrast, the PCOS registry doesnot contain information obtained fromindividual physicians, but it does includepatient-reported health-relatedquality-of-life data from diverse cohortsof patients, including many whoare diagnosed at later stages. As itrepresents a cross-sectional database,it does not include long-term followupinformation. Finally, the CaPSUREregistry contains longitudinal informationon patterns of care, clinical outcomes,and self-reported health-relatedquality-of-life data, but is limited bythe inclusion of only a small percentageof prostate cancer patients who belongto racial or ethnic minorities.Cooperberg et al highlight importantfindings in the areas of clinicalpresentation, patterns of care, survival,and quality of life that can be obtainedfrom registry studies anddescribe the advantages and limitationsof each registry. They also outlinestrategies in which the registriescan be used together to provide additionaldata and to supplement eachregistry's deficiencies. It should benoted, however, that additional, butsmaller, prostate cancer registries exist,and that these registries can provideimportant information ontraditionally hard-to-reach populations,including racial/ethnic minorities,persons of low socioeconomicstatus, and those with poor health literacyskills.Chicago Cohort
The Chicago Cancer of the ProstateOutcomes Study (Chicago CaPOS) iscurrently recruiting patients to a longitudinalhealth-related quality-of-lifestudy being conducted at three equalaccesscenters in Chicago-a VeteransAffairs hospital, a county hospital,and a private hospital with extensiveoutreach programs. Of the 205 patientscurrently enrolled, 70% are African-American, 61% are over the age of 65,45% have less than 9th grade literacylevels, and 60% have annual incomesof less than $20,000. Diagnostic andstaging information is collected frommedical records at baseline, and treatmentinformation is followed throughperiodic chart reviews. In addition,participants are interviewed with respectto health-related quality of lifeprior to the initiation of treatment andat 3- and 12-month follow-up, whichallows for prospective assessments ofhealth-related quality of life, treatments,and outcomes.Clinical presentation and patternsof-care findings from this cohort aresimilar to those reported by the fourlarge registries. Almost half of the patientsin recent years presented withearly-stage and low-risk disease. Nonetheless,only 12% chose watchful waitingand 60% underwent a radicalprostatectomy or external-beam irradiation.However, early findings fromthe cohort indicate that among a populationcharacterized by low socioeconomicstatus and good access to healthcare, poor health literacy skills are animportant and often overlooked factorto consider when identifying individualswho present with high prostatespecificantigen levels.Conclusions
With policymakers' current emphasison cancer survivorship, longtermstudies of prostate cancer patientsare becoming increasingly important.Information obtained from the fourlarge ongoing prostate cancer registries,supplemented by similar dataelements from smaller cohorts of hardto-reach individuals with prostate cancer,can provide important insights.The alphabet soup of privately andpublicly funded prostate cancer registriesrepresents a unique national jewelthat can assist in improving ourunderstanding of prostate cancersurvivorship.

Disclosures:

The authors have nosignificant financial interest or other relationshipwith the manufacturers of any productsor providers of any service mentioned in thisarticle.

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