People living with multiple sclerosis often need aids in order to remain mobile. A new co-operation project is investigating how more than 240,000 sufferers across Germany can be provided with these aids to meet their needs.
Multiple sclerosis is the most common chronic inflammatory disease of the central nervous system and occurs in relapses. Almost a quarter of a million people across Germany, around a tenth of them in Lower Saxony, live with this diagnosis. People with MS manage their everyday lives regardless of physical, cognitive and emotional impairments. Wheelchairs, walking and access aids, as well as visual and communication aids, ensure that they can participate in their jobs and in society.
How can MS patients - in addition to access to doctors and medication - be provided with these aids in line with their needs? This question will be investigated over the next three years by Oldenburg healthcare researcher Dr Anna Levke Brütt and special education teacher Prof. Dr Annett Thiele in the co-operation project "Multiple Sclerosis - Patient-Oriented Care in Lower Saxony" (MS-PoV).
Under the aegis of Hannover Medical School (MHH), scientists have joined forces in the new project with the Allgemeine Ortskrankenkasse (AOK) Lower Saxony as the funding organisation and the German Multiple Sclerosis Society (DMSG) as the patient association. In addition to the DMSG regional association of Lower Saxony, MS-Forschungs- und Projektentwicklungs gGmbH, which manages the patient register, is also involved.
This enables the team to combine different data sources - including settlement and register data - to create an overall picture of the current care situation and identify regional differences and possible deficits. The Innovation Fund of the Joint Federal Committee, the highest decision-making body of the self-administration in the German healthcare system, is funding the project with 1.3 million euros.
The impetus for the project came from the ranks of MS sufferers in Lower Saxony, reports Brütt. The DMSG had learnt about the different care situations of its members. In an initial survey of 161 sufferers, the patient association had already identified differences between urban and rural areas, for example in the waiting periods for doctor's appointments after an attack. "As this only sheds light on a section of the actual care situation," says Brütt, the Oldenburg researchers and their cooperation partners now wanted to scientifically analyse the actual care situation.
While Thiele and Brütt are focussing on the topic of assistive devices, the MHH scientists from the Institute of Epidemiology, Social Medicine and Health Systems Research will be looking at the medical and drug care of MS patients. "One focus of the project as a whole is on regional differences - particularly between rural and urban areas - and the comparison of different forms of MS and degrees of severity," explains rehabilitation researcher Brütt.
Specifically, the Oldenburg scientists are initially planning an exploratory approach. "We want to use group discussions with doctors and patients, for example, to find out which aids come into play at which point in the course of the disease and how they are actually used," explains Brütt. A subsequent online survey of AOK policyholders aims to "analyse identified problems in a larger group". Finally, the project will involve patients, carers and funding bodies in a "future workshop" to jointly develop possible suggestions for improving the provision of aids.
