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A new UK study has revealed that people with MS do not always report their relapses despite the domino effect on their health, financial security and support networks.[1,2] The study also uncovered that inadequate patient reporting of relapses may bias views of clinicians on the adequacy of disease modifying treatments.[1,2] Preliminary findings from the study presented at the 29th congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) have shown a worrying trend towards MS health professionals accepting a level of ongoing MS relapses as inevitable without considering alternative treatments, as well as significant underreporting of relapses by patients. Nearly half (46%) of respondents had experienced a relapse but did not report it.[1,2]
The Novartis funded MS Pathways study led by Dr Martin Duddy, consultant neurologist at Royal Victoria Infirmary, Newcastle found that over a quarter of people had not reported their most recent relapse, despite two out of three employed respondents having to take time off work and 66% needing to call on their support network for help with simple daily tasks.[1,2] The financial burden of relapses was striking, with a third of respondents reporting a reduction in family income, nearly half (48%) of respondents had to temporarily reduce their hours, whilst 8% had to permanently reduce their hours and 10% had to give up work entirely.[1,2]
Dr Martin Duddy commented; "Even minor relapses have an impact on a patient's physical and psychological well being, as well as their financial well being. The uncertainty of not knowing when the next relapse might come can be a strain for many people. We need to have a clear picture of whether or not patients are having relapses, as they have an important role in assessing whether they need treatment and whether that treatment is working."
The main reasons cited for underreporting were that patients considered their symptoms too mild or did not feel there was anything healthcare professionals could do.[1,2]
Over the past few years clinical opinion regarding relapses has begun to change, with a clear shift away from unquestioning acceptance of relapses, towards all relapses being considered a sign of clinical activity that merit discussion and action.[3,4] The MS Pathways study provides further evidence to support the need for better systems to ensure full reporting of relapses so that MS healthcare professionals can make informed treatment decisions with their patients.[1,2]
Amy Bowen, Director of Service Development at the MS Trust commented; "The MS Trust welcomes this important study. It is crucial that we improve reporting of relapses and ensure that people with MS receive the right information about recognising a relapse and the treatment that is available to help them manage its impact. No one should be coping with the burden and disruption of a relapse without the support of their MS team, particularly their MS specialist nurse."
MS is the most common neurological condition affecting young adults in the UK. It is estimated that 100,000 people in the UK have MS5 - relapsing remitting MS (RRMS) is the most common form, affecting 80% of people.
Relapses are unexpected and can happen at any time. The impact of a relapse can last for weeks or months and the symptoms may range from loss of vision to spasm and mobility problems. Such symptoms can have a huge impact on family life, work and social activities, and the unpredictable nature of relapses can make it difficult for a person with MS to plan ahead with confidence.
The number of relapses experienced (annualised relapse rate) is one of four key measures used to assess the progression of a patient's MS, in addition to physical disability, lesion activity on MRI and brain volume loss as measured by MRI.[8,9]
A team of MS healthcare professionals, including Dr Duddy are working together with Novartis to develop educational materials to support more effective reporting of relapses.
 Duddy M et al. Impact of relapse on patients - UK experience. Abstract presented at ECTRIMS Congress, Copenhagen, Denmark, 2-5 October 2013.
 Duddy M et al. Impact of relapse on decision making - UK experience. Abstract presented at ECTRIMS Congress, Copenhagen, Denmark, 2-5 October 2013.
 There is no such thing as a mild relapse. The mild relapse is an Anglo-Saxon delusion – commentary. Michael Hutchinson. Mult Scler 2012 18(7): 930-931.
 Multiple Sclerosis Research BlogSpot. http://multiple-sclerosis-research.blogspot.co.uk/2013/08/detection-and-importance-of-relapses.html. Last accessed September 2013
 MS Society. What is MS? http://www.mssociety.org.uk/about_ms/what_is_ms/index.html Last accessed September 2013.
 NICE fingolimod technology appraisal. http://www.nice.org.uk/nicemedia/live/12170/50871/50871.pdf Last accessed September 2013.
 MS Trust. MS Explained. http://www.mstrust.org.uk/downloads/ms_explained.pdf Last accessed September 2013.
 Hartung et al. Relationship between early disease activity and long-term clinical outcome: Results from the phase 3 TRANSFORMS study extension at 4.5 years in relapsing-remitting multiple sclerosis. European Neurological Society, June 9, 2013 P380.
 Montalban et al. Long-term efficacy of fingolimod in patients with relapsing-remitting multiple sclerosis previously treated with interferon beta-1a or disease-modifying therapies: A Post-hoc analysis of the TRANSFORMS 4.5 year extension study. European Neurological Society, June 10, 2013 P539.
Article adapted by Medical News Today from original press release. Click 'references' tab above for source.
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11 Dec. 2013. <http://www.medicalnewstoday.com/releases/267015>
Novartis. (2013, October 7). "New data highlight significant hidden impact of relapses on people with multiple sclerosis." Medical News Today. Retrieved from
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