Prevalence of urinary and bowel incontinence among individuals with myositis: A cross-sectional study

Background: No evidenced link exists between myositis and incontinence, however myositis patients identify incontinence as an issue. This research was initiated in response to advocacy by consumers to investigate this topic. Objective: The aim of this research was to explore the prevalence of urinary incontinence and bowel incontinence in the Australian myositis population, compared to an age-matched general Australian population. Methods: An online survey with validated questionnaires measured urinary and bowel incontinence and physical function amongst individuals with myositis. Recruitment was via email in collaboration with the Myositis Association of Australia. Published Australian general population data was used as the comparison group. Results: Results revealed urinary incontinence and bowel incontinence prevalence was significantly higher in the myositis population compared to the Australian population. Conclusion: This is the first known study to explore the prevalence of urinary and bowel incontinence in a Myositis population. This consumer-driven study confirmed anecdotal reporting of increased prevalence of urinary and bowel incontinence within the myositis population. The study also evidences the critical role of consumers in better understanding complex conditions and their impact.