Abstract
OBJECTIVES: Nerve damage and/or spinal cord injury in individuals with multiple sclerosis (MS) may result in the development of bladder and bowel problems. We wanted to gain insight into two issues: the prevalence of bladder and bowel problems among individuals with MS and the referral pathways for these problems to various physicians treating patients with MS. METHODS: In the autumn of 2021, we undertook a nationwide cross-sectional study. We used a comprehensive questionnaire comprising 63 questions covering aspects such as MS diagnosis, disease progression, bladder and bowel issues, and consultations with healthcare professionals. Individuals with MS were invited to participate through social media or by direct mail. RESULTS: The study included 1,082 validated respondents (81.5% female) with an average age of 53.3 years at participation, and an average age of 38.3 years at MS-diagnosis. Among the respondents, 91% experienced bladder problems while 73% indicated they had bowel problems. Within these respective groups, 42% and 47% were not aware of the connection between these issues and MS. Bladder and bowel related complaints disrupted daily life for 45% and 28% of the respondents, respectively. The patients consulted various healthcare providers for their complaints. Most respondents expressed dissatisfaction with the time it took to resolve their problems and 9% of those with bladder complaints and 60% of those with bowel complaints had not yet found a satisfactory solution. CONCLUSIONS: In the Netherlands, bladder and bowel symptoms in individuals with MS are highly prevalent and have a considerable impact on quality of life. Lack of awareness of these symptoms frequently leads to inadequate recognition, both by the patient and healthcare professional. Patients often consult various healthcare professionals for these complaints, which can potentially result in suboptimal treatment due to a lack of specialized expertise.