Measuring patients' perceptions of the outcomes of treatment for early prostate cancer.
BACKGROUND
Compared with careful attention to the physical (eg, urinary, bowel, sexual) dysfunction that may follow treatment, little attention has been given to the behavioral, emotional, and interpersonal changes that the diagnosis of early prostate cancer and subsequent physical dysfunction may bring.


OBJECTIVE
To construct patient-centered measures of the outcomes of treatment for early prostate cancer.


METHODS
Qualitative study followed by survey of early prostate cancer patients and group of comparable patients with no history of prostate cancer. Analysis of focus groups identified relevant domains of quality of life, which were represented by Likert scale items included in survey questionnaires. Psychometric analyses of survey data defined scales evaluated with respect to internal consistency and validity.


RESULTS
Qualitative analysis identified three domains: urinary control, sexuality, and uncertainty about the cancer and its treatment. Psychometric analysis defined 11 scales. Seven were generically relevant to most older men: urinary control (eg, embarrassment with leakage), sexual intimacy (eg, anxiety about completing intercourse), sexual confidence (eg, comfort with sexuality), marital affection (eg, emotional distance from spouse/partner), masculine self esteem (eg, feeling oneself a whole man), health worry (eg, apprehensiveness about health changes), and PSA concern (eg, closely attending to one's PSA). Four scales were specific to the treatment experience: perceived cancer control, quality of treatment decision making, regret of treatment choice, and cancer-related outlook.


CONCLUSIONS
The scales provide definition and metrics for patient-centered research in this area. They complement measures of physical dysfunction and bring into resolution outcomes of treatment that have gone unnoticed in previous studies.
Clark
Jack A
JA
Health Services Department, Boston University School of Public Health, and Center for Health Quality, Outcomes, and Economic Research, Edith Nourse Rogers Memorial Veterans Hospital-Bedford, Boston, Massachusetts 02118, USA. jaclark@bu.edu
Bokhour
Barbara G
BG
Inui
Thomas S
TS
Silliman
Rebecca A
RA
Talcott
James A
JA
D000368:Aged; D016022:Case-Control Studies; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D011471:Prostatic Neoplasms / Q000523:psychology* / Q000628:therapy*; D011594:Psychometrics; D011788:Quality of Life / Q000523:psychology*; D012649:Self Concept; D020377:Self Efficacy; D019529:Sexuality / Q000523:psychology; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires; D013997:Time Factors; D016896:Treatment Outcome; D014549:Urinary Incontinence / Q000209:etiology / Q000523:psychology