Abstract
Prostate Cancer Patient Associations (PCPAs) have become common. The aim of this study was to evaluate the quality of life of patients belonging to PCPAs. Members of 10 PCPAs in Sweden with prostate cancer completed 2 quality of life questionnaires (Quality-of-Life Questionnaire [QLQ-C30] and Prostate Cancer Symptom Scale). Of 2,028 members, 1,301 (64%) responded to the survey. Sixty percent of the members felt "healthy," and 38% were "free from the cancer." Ninety-five percent scored >80 on the physical function scale compared with 44% on the overall quality of life/health scale. The most severe symptom was sleeping disturbances (mean = 29). Seventeen percent scored "Quite a bit/Much" tiredness. More than 50% did not report any bladder or bowel problems. Fifty percent had "Much" sexual problems, and almost 80% did not have sufficient erection. Those reported as being "disease free" scored higher on the functioning scales than those with "metastatic disease." Those with an experience of a "metastatic disease" had more symptoms than those with less advanced disease. This is the first descriptive study of quality of life in members of Swedish PCPAs with prostate cancer. These findings show that it is possible to gain valid data to further study the situation of patients living with prostate cancer by collecting data from PCPAs.