Bladder dysfunction is among the top 10 most frequently reported functional domains affecting people living with multiple sclerosis (MS), reports a study presented at EAU 2026.
“I always need to know where the nearest bathroom is,” said one participant. “It limits everything.”
“They have anxiety before leaving home,” according to co-researcher and study presenter Dr Lydia Makaroff, Multiple Sclerosis International Federation, Head Office, London, UK. “It means missed work, missing a social event, sleep disruption, fatigue, loss of confidence, [and] loss of dignity.”
This study used a mixed-methods participatory design, co-led by clinicians, researchers, and people with MS in partnership with a coordination team of patient advocates. Makaroff and her team conducted group discussions to identify lived-experience items called functional domains, which were refined through an online survey done in seven different languages.
Eighty-three participants joined the pilot and tested clarity and accessibility. The main survey was carried out from 26 September 2023 to 16 December 2023, yielding a total of 5,218 responses from 70 countries. The research team then performed quantitative and qualitative analyses with patient advocates to establish the most important domains.
People with MS identified 26 most frequently experienced functional domains, and the top ten included bladder problems, fatigue, stress, pain, concentration difficulties, memory problems, numbness and tingling, mobility limitations, muscle stiffness, and anxiety. [EAU 2026, abstract PA1]
Bladder dysfunction (eg, urgency, frequency, nocturia, difficulty starting to urinate, and repeated urinary tract infections) was among the most burdensome problems. This condition often affects sleep, relationships, and social participation of people living with MS.
Invisible
According to the participants, continence issues are usually “minimized” during consultations and represented inadequately in current measurement tools despite their effect on dignity and daily life.
Furthermore, “the symptoms are also invisible and dismissed by clinicians,” Makaroff said. “We had many people say they had recurrent infections which can actually trigger relapses of MS and cause the disease to get worse.”
When people with MS were asked about what they want healthcare professionals to understand, many stated that they want “all of the healthcare professionals to understand that bladder dysfunction in people with MS is common, unpredictable but often missed.”
“Experiences differ between individuals. The symptoms will shift across the disease course, but proper management needs time, trust, and dialogue. It needs a conversation,” Makaroff said.
“We need to break down silos, so we need to have the neurologists speaking to the urologists, speaking to the nurses, and community support,” she added.
Collaboration
The participatory approach employed by this study demonstrated how lived experience can inform the development of outcome measures that reflect what matters to patients, according to the researchers, noting that the model provides a framework for collaboration between urology and patient advocacy communities, including those focused on bladder, prostate, kidney, and incontinence.
“Integrating patient-defined outcomes into research, clinical care, and health policy can ensure continence and quality of life are central to treatment evaluation and service design,” they said.
“Patient-reported outcomes matter,” Makaroff said. “Care improves when lived experience defines outcomes.”