TaP-MS: Treatment Priorities and Expectations of people with Multiple Sclerosis

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 the 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.

Methodology overview

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

iSAID: Sources of Additional Information in Diabetes

Information about diabetes is readily available including online, in print, through healthcare professionals and the wider family and friends circle. Yet despite there being more medicines and information than ever before about managing diabetes, the number of people worldwide with type 2 diabetes in 2017 was nearly 425 million with an increase estimated to around 629 million by 2045 (International Diabetes Federation Diabetes Atlas 8th edition 2017).

Managing diabetes is complex and involves many healthcare professionals and with rapidly growing technology to monitor and manage diabetes, adherence in type 2 diabetes is poor with approximately 7 out of 10 people behaving non-adherently.  

Why do sources of additional information matter?

Increasing adherence to medicine is more than just giving people information. Although providing the right information at the right time is important, who shares that information and how it’s shared are factors that impact and influence people about how they feel about their medicines and their condition.

How was the iSAID research conducted?

The research was focused on gathering insights through via focus group discussions, interviews and social media listening. Using behavioural science and established adherence models and frameworks the data was thematically analysed.

What did this research achieve?

The insights gathered were very interesting and informed how a larger programme was developed. Read the report for key findings.