Going With the Flow Quality-of-Life Outcomes of Cancer Survivors With Urinary Diversion

PURPOSE: The purpose of this descriptive study was to describe health-related quality of life (HRQOL) concerns among cancer patients with continent urinary diversion (UD) and incontinent UD. SUBJECTS AND SETTINGS: Study participants were accrued from members of the California United Ostomy Association and 2 cancer centers in Southern California. INSTRUMENT: The City of Hope HRQOL-Ostomy Questionnaire (COHHRQOL-O) is a modified HRQOL measurement tool based on the original work done over a number of years by Grant and colleagues. METHODS: The COHHRQOL-O was mailed to 2,890 individuals. Of the 1,600 returns, there were 307 responses from patients with LID, indicating that they had a UD and a diagnosis that clearly indicated cancer. RESULTS: The majority of respondents were diagnosed with bladder cancer, and the average time since surgery was 9.5 years. While most patients reported being sexually active prior to UD, less than 27% resumed sexual activity after surgery. More than 75% of patients also reported difficulty in adjusting, to their LID, with the majority reporting difficulty with urine leakage. Those who were incontinent reported a range of bothersome issues, such as skin problems around the UD, difficulties in managing UD care, fear of recurrence, financial worries, family distress, and uncertainty about the future. CONCLUSIONS: The results of this study add to our understanding of how patients adjust to a UD and what problems and issues can occur, even years after the initial surgery. Mastering UD care is best done under the guidance of a WOC nurse, and access to WOC nurse is essential when problems occur.