LAUSR

Background: In the field of uro‐oncology, the assessment of quality of life (QoL) is considered an integral part of clinical research. Because of the rarity of penile cancer, there is currently no cancer‐specific questionnaire module available to assess the tumor‐specific loss of function and symptoms in terms of influencing QoL. The aim of the study was to apply a validated questionnaire (European Organization for Research and Treatment of Cancer [EORTC] QLQ‐C30) in a population of patients diagnosed with penile cancer and to compare these results to reference data of the general population. We also developed a new unvalidated questionnaire (Quality of Life Questionnaire–Penile Cancer–Rostock, HRO‐PE29) in this population to promote QoL research in the field of uro‐oncology. Patients and Methods: Cross‐sectional evaluation of patients with penile cancer after local surgical treatment (n = 76) was performed using EORTC QLQ‐C30 and HRO‐PE29. The QLQ‐C30 provides information on QoL, functional scales, symptom scales, and 6 individual items (inappetence, insomnia, dyspnea, constipation, diarrhea, financial difficulties). Cancer‐specific functional and symptom scales (HRO‐PE29) were then established for use in different disease states and forms of treatment. These provide information on QoL as well as on cancer‐specific function and symptom scores. Results: The global QoL score was 54, which corresponds to an average QoL (score 0‐100) and was well below the age‐standardized average for German patients. For the general function scores, the following mean values were determined: physical (&OV0335; = 73), social (&OV0335; = 61), emotional (&OV0335; = 60), cognitive functioning (&OV0335; = 69), and role function (&OV0335; = 63). With regard to the general symptom scores and the individual items, the following values were found: fatigue (&OV0335; = 35), nausea (&OV0335; = 6), pain (&OV0335; = 27), dyspnea (&OV0335; = 23), insomnia (&OV0335; = 41), loss of appetite (&OV0335; = 25), constipation (&OV0335; = 19), diarrhea (&OV0335; = 10), and financial difficulties (&OV0335; = 25). The following mean values were found for the cancer‐specific functional scores: voiding (&OV0335; = 77), sexuality (&OV0335; = 69, function and pleasure), body image (&OV0335; = 64), lymphedema (&OV0335; = 75), future prospects (&OV0335; = 72), and adverse effects of systemic treatment (&OV0335; = 73). Conclusion: Defects of the external genitalia have implications for identity, personality, and interpersonal relationships. The mental stress of these patients results from the diagnosis of cancer as well as the partly mutilating treatment. Reconstructive surgery in penile cancer patients promises to maintain sexual and micturition function and thus improve QoL. Cancer‐specific functional losses can be sufficiently named and their influence on QoL determined.