MS-Vita

Patient-orientated provision of aids for bladder and bowel dysfunction in people with multiple sclerosis

Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system in which the patient's own immune system attacks the nerve fibres in the brain and spinal cord and can cause damage as a result. This disease usually begins in early adulthood and can take different progressions. The clinical picture of MS is characterised by a variety of different symptoms that can cause severe physical, cognitive and emotional impairments and have a significant impact on the quality of life of people with ms. Bladder and bowel dysfunction are among the symptoms that are perceived as particularly distressing. Although the likelihood of bladder and bowel dysfunction increases as the disease progresses, the symptoms are considered taboo and underdiagnosed.

Participants from the consortium management and partners at the first project meeting in Hanover

In collaboration with the MS Register [MS Forschungs- und Projektentwicklungs-gGmbH (MSFP)], Ostfalia University of Applied Science, under the direction of Prof. Dr Martina Hasseler, the cooperation project ‘Patient-oriented provision of aids for bladder and bowel dysfunction in people with multiple sclerosis’ was launched on 1 January 2024. The participatory research project has been initiated with the objective of analysing the current care situation of individuals suffering from MS, with a view to facilitating a comprehensive understanding of the issue and the development of sustainable solutions to improve the care they receive. As a first step, a patient advisory board will be established together with the participating patient organisations. This advisory board will enable people with MS and their relatives to be directly involved in research and will discuss and develop future patient guidelines together with care providers and scientists. Furthermore, an online survey is to be developed in co-operation with the advisory board. This will be based on the planned interviews with 16 focus groups consisting of people with MS, (caring) relatives, nursing professionals, physiotherapists, doctors and employees of medical supply stores and an analysis of the registry data from the MS Register. The online survey will then be forwarded to ten to twelve MS Register centres and spread via the channels of the DMSG federal association.

Further consortium partners of the project are the University of Oldenburg, the German Multiple Sclerosis Society (DMSG) federal association, the German Multiple Sclerosis Society (DMSG) chapter of Lower Saxony, the Medical University of Hannover and the AOK Lower Saxony.

Roles

The MS Register is significantly involved in the development, implementation and testing of the planned online survey. For this purpose, it provides registry data on the condition that the MS patient provide their voluntary consent. In addition, the MS Register will take over the recruitment of MS patients via the MS Register centres and subsequently the quantitative evaluation of the online survey.