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Purpose: We assessed the impact of primary surgery, including penile sparing surgery vs (partial) penectomy and lymphadenectomy, on sexuality and health related quality of life.Materials and Methods: We invited 147 patients surgically treated for penile cancer at our institution between 2003 and 2008 to complete the IIEF-15, SF-36®, IOC (version 2) and questions on urinary function. We evaluated the impact of primary surgery type and lymphadenectomy on these outcomes. We also compared patient SF-36 scores with those of an age and gender matched normative sample from the general Dutch population.Results: A total of 90 patients (62%) returned a completed questionnaire. Surgery type and extent were not associated significantly with most of the study outcomes assessed. However, men who underwent (partial) penectomy reported significantly more problems than those treated with penile sparing surgery, including orgasm (effect size 0.54, p = 0.031), appearance concerns (effect size 0.61, p = 0.008), life interference (effect size 0.49, p = 0.032) and urinary function (83% vs 43%, p Conclusions: Few differences were observed in sexuality and health related quality of life as a function of primary surgery and lymphadenectomy. However, (partial) penectomy and lymphadenectomy were associated with more problems with orgasm, body image, life interference and urination. Additional longitudinal studies are warranted to evaluate individual changes with time in these outcomes.

Purpose: Quality of life is of great concern to patients considering treatment options for prostate cancer. In the absence of clinical trial data clearly demonstrating that a particular treatment is superior to another for localized prostate cancer, in terms of cause specific survival, patients may value quality of life as much as quantity of life. The goal of this review is to familiarize the reader with the methodology of quality of life research and to review the recent literature on quality of life outcomes in prostate cancer.Materials and Methods: A structured MEDLINE review of literature on health related quality of life in prostate cancer for the years 1995 to 2001 was performed, and was augmented with highly relevant articles from additional selected journals.Results: In the case of advanced or metastatic disease, where the goal of treatment is palliation and symptom-free survival, quality of life often becomes the primary desired outcome. In localized disease all treatments affect health ...

We examined the extent of agreement in health related quality of life ratings provided by patients with metastatic prostate cancer and their spouses. This agreement is important for determining the feasibility of using spouses as potential proxy raters in quality of life studies in this patient population.The study sample consisted of 72 pairs of patients with metastatic prostate cancer in remission or progression and their spouses. Patients and spouses independently completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30 and a prostate cancer specific questionnaire module. Together the 2 questionnaires assess a wide range of symptoms and functional limitations for a total of 21 quality of life outcomes.For 5 of the 21 patient-proxy comparisons we noted systematic differences in the mean score with spouses rating more impairment in patients than patients indicated. Most patient-proxy correlations were 0.40 to 0.75, indicating moderate to good agreement in patient and spouse ratings. A low patient-proxy correlation of less than 0.40 was noted only for the 2 measures of sexual function.Our findings suggest that the spouses of men with metastatic prostate cancer evaluate with a fair degree of accuracy how patients experience physical and psychosocial functioning, symptoms and overall quality of life. However, caution should be exercised when relying on proxy raters for assessing sexual functioning and satisfaction.

The use of self-report questionnaires for the assessment of health-related quality of life (HRQOL) is increasingly common in clinical research. This method of data collection may be less suitable for patient groups who suffer from cognitive impairment, however, such as patients with brain cancer. In such cases, one can consider employing the patients' significant others as proxy raters of the patients' health-related quality of life. The authors examined the response agreement between patients with brain cancer and their significant others on a health-related quality of life instrument commonly used in cancer clinical trials, the EORTC QLQ-C30, and on a brain cancer-specific questionnaire module, the QLQ-BCM.The study sample consisted of 103 pairs of patients, with either recently diagnosed or recurrent brain cancer, and their significant others (75% spouses, 22% relatives, and 3% friends). Patients and proxies independently completed the EORTC QLQ-C30 and the QLQ-BCM at three different times.Approximately 60% of the patient and proxy scores were in exact agreement, with more than 90% of scores being within one response category of each other. For most HRQOL dimensions assessed, moderate to good agreement was found. Statistically significant differences in mean scores were noted for several dimensions, with proxies tending to rate the patients as having a lower quality of life than the patients themselves. With the exception of fatigue ratings, this response bias was of a limited magnitude. Less agreement and a more pronounced response bias was observed for the more impaired patients, and particularly for patients exhibiting mental confusion. This finding was confirmed by longitudinal analyses, which indicated lower levels of patient-proxy agreement at follow-up for those patients whose physical or neurologic condition had deteriorated over time.In general, patients and their significant others provide similar ratings of the patients' quality of life. Lower levels of agreement and more biased ratings can be expected among those patients for whom the need for proxies is most salient. It is argued, however, that discrepancies between patient-proxy ratings should not be interpreted, a priori, as evidence of the inaccuracy or biased nature of proxy-generated data. Future studies are needed to examine the relative validity and reliability of patient-versus proxy-generated health-related quality of life scores.

This paper reviews a range of issues related to the assessment of subjective response and quality of life in prostate cancer clinical research. With regard to subjective response criteria, the Karnofsky performance status scale and the subjective components of the World Health Organization acute and subacute toxicity scales appear to hold certain advantages over competing measurement systems. Nevertheless, the available evidence suggests that further developmental work is needed to improve the precision of these instruments. In the area of quality of life assessment, there does not appear to be a clear choice among the array of available measures. Although there are several promising instruments, none has undergone sufficient field testing to justify widespread adoption in clinical research settings. A number of suggestions are offered to facilitate further development in quality of life instrumentation and research implementation.