ALERT study: Attitudes, Lived ExpeRience and Treatment in MS bladder and bowel

Abstract

Objectives: To gain more understanding of the real-world lived experience of neurogenic bladder and bowel among people with multiple sclerosis (PwMS). Few studies have explored this important perspective. Methods: Qualitative and quantitative methods were applied for data collection. A total of 16 PwMS were recruited into the qualitative phase. The themes emerging from these interviews were used to develop a questionnaire. An online survey was hosted on the Enalyzer platform with the link promoted by The MS Trust. In total, 1148 PwMS took part in the survey. Results: The authors dentified key personal impacts of bladder and bowel symptoms, and varying levels of patient satisfaction with their care and the information they received. Conclusions: Two themes were identified as needing to continue to be explored in order to improve the care landscape for PwMS: ‘breaking the loo taboo’ – encouraging PwMS to talk about their bladder and bowel problems and ‘making every contact count’ – encouraging the multidisciplinary team to be proactive in asking questions. Neurogenic bladder and bowel should be prioritised and championed both at a national and local level in terms of policy and service delivery, to ensure that PwMS have timely access to person-centred pathways and treatments.