JA Clark, CHQOER; BG Bokhour, CHQOER; TS Inui, Fetzer Institute; RA Silliman, Boston University School of Medicine; JA Talcott, Massachusetts General Hospital

Objectives: An estimated 144,320 American men will be told they have early prostate cancer in 2000. Most will choose active therapy that provides both a promise of cure and a risk of long-term side effects. Nearly all patients will survive five years, yet little is known about the effects of treatment on the quality of men's lives, other than urinary, bowel, and sexual dysfunction. We sought to describe the outcomes of treatment that men perceive, using patient-centered measures of prostate cancer-related quality of life.

Methods: We assessed overall health status, urinary, bowel, and sexual function, prostate cancer-related quality of life, and demographics in a mail survey of patients diagnosed with clinically staged early prostate cancer 12 to 48 months previously and a control group of patients with no history of prostate cancer and a negative PSA result in the previous 12 months. We compared patients and controls with respect to quality of life, including 14 newly developed, patient-centered scales. Among prostate cancer patients, we examined variation in prostate cancer-related quality of life with respect to type of treatment (surgery vs. external beam radiotherapy), urinary and sexual function, and age, race, and marital status.

Results: 356/540 (66%) prostate cancer patients and 393/658 (60%) control patients responded to the survey. Prostate cancer patients had a median age of 70; 34% were African American; and 60% were married. Most reported they had undergone either prostatectomy (44%) or external beam radiotherapy (41%), and 13% reported subsequent hormone suppression therapy. Prostate cancer survivors did not differ from controls with respect to coexistent disease or the Physical and Mental Component Summaries of the SF-12. Prostate cancer survivors reported greater urinary incontinence and urinary obstruction/irritation, and lower sexual function, and worse scores on scales measuring behavioral problems related to urinary function, sexual performance, sexual confidence, and sexual fantasy life, stigma, and masculinity, compared with controls. Survivors who had undergone radiotherapy perceived less control of their cancer. Among survivors, urinary incontinence and sexual dysfunction were associated with worse quality of life, while age was negatively correlated with sexual confidence and fantasy life, and perceived cancer control. Urinary problems and feelings of marital disaffection were worse, but cancer-related outlook was better among African Americans, compared with other, predominantly white, survivors. Better quality of life was reported by men who were married or with a partner who was "like a spouse" with respect to urinary problems, sexual confidence and fantasy life, stigma, and perceived cancer control.

Conclusions: Our findings suggest that prostate cancer treatment has manifold impacts on quality of life, beyond urinary, bowel, and sexual dysfunction. These impacts vary somewhat by age and race, while being married appears to offer some protection from poor psychosocial outcomes. These findings need to be confirmed in prospective, longitudinal studies.

Impact: These findings, which highlight previously unrecognized outcomes of treatment, may help future patients make informed choices regarding prostate cancer screening and treatment, and help their physicians address persistent problems of adapting to life as a prostate cancer survivor.