CHICAGO—In 1994, the National Cancer Institute began a large-scale, longitudinal investigation of health-related quality of life outcomes in men diagnosed with prostate cancer. Arnold Potosky, PhD, updated the trial’s progress at a quality of life and outcomes symposium sponsored by Northwestern University and Evanston Northwestern Healthcare.

The project team is currently analyzing changes in quality of life after a prostate cancer diagnosis in the study population, said Dr. Potosky, senior investigator in the National Cancer Institute’s Division of Cancer Control and Population Science. Ultimately, he expects the findings will be incorporated into clinical practice to assist patients and physicians in making decisions about prostate cancer treatment.

The project, known as the Prostate Cancer Outcomes Study, is being conducted by the NCI’s Surveillance, Epidemiology, and End Results (SEER) program in collaboration with six SEER cancer registries.

The study is designed to determine the prevalence of complications across a large population of men with prostate cancer and provide generalizable results concerning prostate cancer practice patterns. It is measuring variations in care, specific aspects of quality of life, and the influence of comorbid conditions in men with histologically confirmed invasive cancer of the prostate.

“The objective is to find men soon after diagnosis and follow them over the long term,” Dr. Potosky said. To meet this goal, the study used a rapid case ascertainment system that identified men within 6 to 8 weeks of their diagnosis and mailed them a survey that asked about their bowel and bladder symptoms and sexual function 6, 12, and 24 months after their diagnosis.

The study also obtains detailed information about the clinical characteristics of the disease and the use of various types of treatment through medical record abstracts from physicians and hospitals.

Since the study began, about 3,500 men out of a total identified sample of 5,600 men have completed 6- or 12-month surveys. The racial and ethnic breakdown is approximately 500 non-Hispanic black, 500 Hispanic, and 2,500 non-Hispanic white.

The cohort is drawn from six SEER areas (Los Angeles, Utah, Seattle, New Mexico, Atlanta, and Connecticut), and the study population is representative of the population of men with prostate cancer in the SEER areas. Dr. Potosky noted that “this is not to say that SEER areas are representative of the country as a whole.”

The NCI plans to conduct ongoing analyses of the data collected by the study and to publish a newsletter for men who participate in the study to keep them informed of its progress. The Institute also seeks “to get the word out about what we’re doing and get feedback,” Dr. Potosky said.