Multiple sclerosis (MS) is a chronic disease attacking the central nervous system (brain and spinal cord) affecting over 2.3million people worldwide, it is 2-3 times more common in women than in men, and people are usually diagnosed between 20 and 50 years of age. Presently, there is no cure for MS, however disease modifying treatments (DMTs) effectively delay disability for people living with MS.
There is extensive information about how people with MS interact with their neurologists and the MS symptoms that they find most distressing. Fatigue is a widespread concern for patients, the significance of which is not always fully understood by those providing medical care and or social support. There is also evidence that the use of medicines may be delayed or impaired because of fears about factors such as drug side effects and or a lack of belief in their benefits.
Why do treatment priorities of peple with MS matter?
There is evidence that the use of medicines may be delayed or impaired because of fears about factors such as drug side effects and or a lack of belief in their benefits. Patients both prioritise and expect treatments that support them in becoming more independent. therfore it is crucial to communicate MS therapeutic advances with patients and instil trust in bio-pharmaceutical innovation, regardless of cultural disparities in attitudes to healthcare. Not much is known about how best such problems can be addressed and the priorities that people with MS have for future treatment improvements.
How was the TaP-MS research conducted?
The aims of he research where to to explore MS patient understandings, beliefs and preferences, to address the gap in present knowledge on expectations and priorities for people with MS and to improve care standards and health outcomes for people with MS globally.
What did this research achieve?
The main recomenations of the research where
- Understanding concerns about treatment trade-off and how these interplay with individual disease-specific, as well as contextual factors
- Removing barriers to disease comprehension becasue patient perceptions and priorities around the disease and treatment may not accurately be reflected in communications using concepts such as brain health
- Look for a holistic approach when supporting people with MS by providing psychological support
The full report is available to download