Bladder dysfunction and quality of life for people with multiple sclerosis

Area of Science:

• Neurology
• Urology
• Quality of Life Research

Background:

• Bladder dysfunction affects a significant majority (75%) of individuals with multiple sclerosis (MS).
• People with MS often hesitate to seek medical treatment for bladder dysfunction, a distressing symptom.
• This study is the first to deeply investigate the impact of bladder dysfunction on the quality of life for those with MS.

Purpose of the Study:

• To explore in-depth how bladder dysfunction interferes with the quality of life for people diagnosed with multiple sclerosis.
• To understand the lived experiences and challenges faced by individuals with MS due to bladder dysfunction.
• To identify the disruptions and losses associated with bladder dysfunction in the context of multiple sclerosis.

Main Methods:

• Conducted 19 individual, semi-structured interviews with participants diagnosed with MS.
• Interviewed participants aged 37-64 years, all experiencing at least one bladder dysfunction symptom.
• Utilized thematic analysis on verbatim transcripts of interviews lasting up to 90 minutes.

Main Results:

• Identified two primary themes: 'Disruptions and Loss' and 'Ways of Knowing'.
• 'Disruptions and Loss' theme details how bladder dysfunction interrupts daily activities and leads to feelings of loss.
• 'Ways of Knowing' theme reveals participants' reliance on experiential knowledge for self-management, often without healthcare provider input.

Conclusions:

• Bladder dysfunction causes major life disruptions for people with MS, who often self-manage symptoms due to healthcare navigation barriers.
• Understanding individual experiences and self-management strategies is crucial for improving care and facilitating independent management.
• Healthcare professionals should discuss all associated disruptions and losses, explore existing self-management strategies, and educate patients on wider health implications.