Research shows that substantial numbers of people with MS currently do not record important symptom changes, despite the potential impact on their disease
- One in three people with MS do not keep any record of their symptoms in-between medical appointments
- 45% have experienced a relapse but did not report it to their healthcare professional
- Nearly 35% agreed that reporting relapses to their healthcare professional is extremely important
- Approximately 85% of people with MS will experience relapses at some stage
- Research commissioned to coincide with launch of new app, SymTracTM, designed by people with MS and available for iPhone and Android devices
New research has found that one in three people (31%) with multiple sclerosis (MS) in Ireland do not keep any record or notes on changes in their MS symptoms in-between their medical appointments. This is despite the fact that these changes may indicate an MS relapse or attack which can be a sign of disease progression.
Almost half of the respondents (45%) said that they have experienced a relapse in their symptoms but did not report it to their healthcare professional, yet nearly 35% agreed that reporting relapses to their healthcare professional is extremely important.
Relapsing Remitting MS (RRMS) is the most common form of MS. A relapse is defined as the appearance of new symptoms, or the return of old symptoms, for a period of 24 hours or more – in the absence of a change in core body temperature or infection. A relapse can also be known as a ‘flare up’ or ‘exacerbation’ of symptoms. Approximately 85% of people with MS will experience relapses at some stage during the course of their disease.
The findings coincide with the launch of SymTrac, the first dedicated iPhone and Android device symptom tracker app for people with MS. The free app has been designed by people with MS and developed in conjunction with Novartis. SymTrac helps people with MS to take more control of their health by monitoring changes in their condition more effectively.
The online survey was conducted among MS Ireland’s members to investigate how people with MS keep track of their condition in-between appointments with their healthcare professional, and to encourage people with MS to avail of new resources which can assist with tracking the symptoms of their MS and their overall well-being.
SymTrac records symptoms as well as general health and wellness information, allowing users to build a comprehensive picture of how they feel over a period of time. The app creates easy-to-read charts which can be stored and shown to healthcare professionals during medical consultations. By recording and keeping all of this key information in one place, people with MS can chart their condition between appointments, and make the most out of their vital consultation time.
Dr. Killian O’Rourke, Consultant Neurologist, Mater Misericordiae University Hospital, Dublin commented on the launch of SymTrac and the importance of relapse recording. “An increase in relapses can mean that a person with MS might require a different approach to their treatment. It is incredibly important that people with MS record any changes they notice in their condition so that they can discuss those changes with their healthcare professional and informed decisions can be made about managing their MS most appropriately. SymTrac will be a really helpful way of keeping this information in one place, and helping people to remember everything they want to discuss during their appointment, ensuring they get the most from their appointment,” he said.
A new information booklet for people with MS has also been produced as an additional educational resource. Understanding Relapse in Multiple Sclerosis - A guide for people with MS and their families is available to download in PDF format from our website. The booklet gives detailed advice on how to manage a relapse and what to expect once one occurs. The guide encourages people to contact their MS nurse or specialist as soon as they experience a relapse.
Commenting on the survey results and the importance of these new resources, Ava Battles, Chief Executive, Multiple Sclerosis Ireland said, “The findings of the survey have really highlighted how our members feel about reporting their relapses to their nurse or doctor. As an organisation we need to encourage people with MS to realise how important it is to take control of their own personal health by monitoring, recording and reporting changes in their condition. The new app and materials will be really beneficial to our members, helping them to learn more about reporting and recording relapses, and keep track of their MS in one convenient place.”
Speaking about the interactive and educational materials, Loretto Callaghan, Managing Director, Novartis Ireland said, “We are delighted to work with MS Ireland on the development of these important resources which we hope will help people with MS play a more active role in monitoring their health. The information recorded on Symtrac can help to guide people with MS and their healthcare professionals with important decisions regarding their treatment and management of their MS.”
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