An exploration of the impact of bladder dysfunction experienced by people with Multiple Sclerosis

Background: Bladder dysfunction is common in people with multiple sclerosis (PwMS) affecting approximately 75% of PwMS at some stage in their lives. This distressing symptom remains a frequently overlooked problem as there is a reluctance to seek advice and treatment for continence issues in PwMS (Wollin et al, 2005) This is the first known study to explore the impact of bladder dysfunction on many aspects of life from the perspective of the person with MS.

Objectives: To explore how bladder dysfunction may affect Quality of life (QoL) in PwMS. To determine what particular aspects of life (social, emotional, financial, and sexual) bladder dysfunction may impact on.

Methods: Participants were identified using purposive sampling techniques from one branch of the Multiple Sclerosis Society of Ireland (MSI). Employees of MSI acted as gatekeepers of the recruitment process. Participants who had previously attended continence workshops were sent a recruitment letter and information leaflet. Individual semi-structured interviews were conducted with PwMS with a definite diagnosis of MS, aged between 18 and 65 who had at least one bladder dysfunction symptom. To ensure in-depth information was collected and quality data be generated each interview lasted at least sixty minutes. Interviews were audio-recorded, transcribed verbatim and thematic analysis was performed.

Results: Six interviews were conducted. Two main themes emerged from the interviews: Theme 1 “Everyday Consequences” represents the consequences of bladder dysfunction throughout different aspects of life-personal, interpersonal and participatory. The personal consequences refer to how participants adapt both their physical behaviour and emotional response to manage and compensate for their bladder symptoms. Participants explained how these personal consequences impacted on their interpersonal relationships. Difficulties with participating in the community were also highlighted in terms of work and travel restrictions. Theme 2 “Knowing versus not knowing” represents the contrast between the detailed knowledge revealed by participants of how their bladder symptoms impacted on their own lives and the gap in knowledge which became evident in terms of the type of self-management strategies employed by participants, their understanding of bladder dysfunction and reporting symptoms to health professionals.

Conclusions: This study provides some insight into the personal, interpersonal, participatory consequences of bladder dysfunction in PwMS. Consequences of travel and work restrictions may result in social isolation and may increase the total economic burden of the condition. The gap in knowledge identified in this study suggests that there may be a role of healthcare professionals in providing PwMS with education specific to bladder dysfunction which may contribute to better emotional wellbeing and self-management strategies in PwMS with bladder dysfunction.