A Quality of Life Survey of Individuals with Urinary Incontinence Who Visit a Self-Help Website: Implications for those Seeking Healthcare Information

Urinary Incontinence (UI) affects 200 million people worldwide with annual direct costs in the US alone estimated at $16.3 billion. Those with UI have reported a decrease in general quality of life with symptoms of depression, anxiety, low self-esteem, poor body image, and social stigmatization. The purpose of this study was to examine the feasibility of collecting self-reported quality of life data in a self-selected sample of individuals who visited a website providing information, education, and management suggestions regarding UI. Participants included 374 individuals with UI who responded to a solicitation for enrollment in a “Continence Comprehensive Health and Life Assessment” survey posted on The Simon Foundation for Continence website (www.simonfoundation.org). Types of problems and events associated with UI, including social connectivity and quality of life, are discussed along with limitations of the study and implications for future research. Given that 13.01 % of respondents had not spoken to a healthcare provider about their UI symptoms, 24.73 % had never seen a healthcare professional who “specializes in bladder problems,” and 75 % said they were not currently using any active approach to managing symptoms, use of such information is discussed in terms of how to construct internet healthcare information to maximize seeking appropriate healthcare services and preparing internet-based information regarding incontinence diagnosis and treatment.