A new £1.85 million research study led by Professor Roshan das Nair at the Institute of Mental Health aims to develop a new screening tool to detect the “invisible” cognitive impairment symptoms that can appear early in the life of a person living with multiple sclerosis (MS).

 

Approximately 100 people are diagnosed with MS every week in the UK. People are most commonly diagnosed with MS in their 20’s or 30’s. There is currently no cure for the lifelong neurological condition that often gets progressively worse.

Up to 70% of people with MS have cognitive problems (problems with memory, attention, and problem solving), which affect their personal, professional and social life. However, in MS clinics, cognitive problems are not routinely identified and cognitive rehabilitation not offered, rendering the symptoms “invisible” despite having a profound effect on a MS patient’s life. Detecting these impairments early in a person’s MS journey and matching them with appropriate interventions provides an opportunity to introduce positive changes to improve their quality of life.

The new six year study “NEuRoMS” (Neuropsychological Evaluation and Rehabilitation in Multiple Sclerosis) is funded by the NIHR Programme Grants for Applied Research and sponsored by Nottinghamshire Healthcare NHS Foundation Trust. The study will be based at the Institute of Mental Health with clinical trials taking place in six MS clinics in the UK.

Dr Susan Kohlhaas, MS Society Director of Research, said:

“There are more than 100,000 people with MS in the UK and problems with cognition are a common experience for many of them. We know this symptom can dramatically impact quality of life, which is why finding ways to treat it is one of our top research priorities, but we also need to be able to identify who could benefit most from this type of treatment. Better screening is vital so that everyone can get the right care, at the earliest possible opportunity.”

Led by Roshan das Nair (from the Division of Psychiatry and Applied Psychology, University of Nottingham), and the team (Drs Nikos Evangelou, Shirley Thomas, Paul Leighton and Prof Denise Kendrick [UoN School of Medicine], Profs Avril Drummond [UoN School of Health Sciences] and Stephen Timmons [UoN Business School], Dr Jen Martin (MindTech MIC), Dr Perry Moore (The Walton Centre), and Mrs Karen Vernon (Salford Royal NHS Foundation Trust). Health Economics is led by Prof Deb Fitzsimmons (Swansea University) and Statistics and Trial Management from Dr Zoe Hoare (NWORTH Clinical Trials Unit, Bangor University).

As an expert in cognitive rehabilitation in neurological conditions and a leading specialist in MS research in the UK, Professor das Nair explained the importance of tackling the invisible, as well as the visible, symptoms:

“This study will raise awareness of the cognitive impairment symptoms that thousands of people living with MS experience every day. Our research will develop and test a new computerised cognitive screening tool that will enable us to identify who needs extra support, and give many more people the tools and techniques that will capitalise on their strength and compensate for any areas of weakness.

“All of this will ultimately improve the quality of life a person can expect to have after receiving a diagnosis of multiple sclerosis.”

Working alongside Professor das Nair and his team will be a group of public and patient involvement volunteers, giving support and challenge from the perspective of people living with MS, its symptoms and cognitive disadvantages. This close involvement will ensure that the new research accurately reflects the needs and experiences of people who are living with MS in the UK today.

Clare Bale, the study's Public Engagement Lead highlighted the importance of working with volunteers:

"This study has the potential to really make sure that the cognitive problems associated with MS that many people with MS find challenging are placed high on the agenda, and that patients can get the right support at the right time. The study is working closely with patients who have MS to make sure their voices underpin its whole approach."

More information about the NEuRoMS study can be found at: www.neuroms.org