Attitudes, Barriers and Facilitators to Physical Activity in People With Multiple Sclerosis Following a Relapse

Multiple Sclerosis (MS) is an inflammatory autoimmune demyelinating disease of the central nervous system (CNS). Over the course of the disease there is usually accompanying axonal degeneration and brain volume loss. It is the most common cause of neurological disability in young adults, with an average age of onset between 20-40 years of age. There are an estimated 107,000 people living with MS in the United Kingdom (UK), with an incidence of 203.4 per 100,000. The aetiology is unknown but is thought to be an interplay between genetic and environmental factors.

MS is an unpredictable condition with varying symptoms depending on the location of damage within the central nervous system. MS is classified into three different phenotypes; relapsing remitting MS (RRMS), secondary progressive MS (SPMS) and primary progressive MS (PPMS). RRMS is the most common form of MS at the time of diagnosis, accounting for 85% of cases. It is characterised by relapses, followed by complete or partial recovery know as a remission. A relapse is defined as 'patient-reported symptoms or objectively observed signs typical of an acute inflammatory demyelinating event in the CNS, current or historical, with duration of at least 24 hours, in the absence of fever or infection'. In people with RRMS, the average relapse frequency is 1.1 per year. Incomplete remissions from a relapse can result in the accumulation of disability. Within 10-15 years 80% of people initially diagnosed with RRMS will transition to SPMS which is characterised by far fewer or no relapses due to less inflammation, but a progressive increase in disability due to neurodegenerative processes. Ten to 15% of people are diagnosed with PPMS, which is defined by a gradual increase in disability from onset, and usually no relapses.

There is no known cure for MS. Disease modifying therapies (DMT's) can alter the immune response which helps control inflammatory activity but their impact on the neurodegenerative processes remains unclear. Steroids are frequently used to treat relapses and consequently the majority of research into relapses has focused on examining their effectiveness and mode of delivery. Steroids can speed up the rate of recovery from a relapse but do not change the level of disability that may occur as a result of the relapse. The majority of improvement in disability following a relapse has been shown to occur within two months but some symptoms, such as arm function, can take up to 12 months.

The most commonly reported symptoms during a relapse are fatigue, lower limb weakness, sensory disturbance and impaired mobility. An MS relapse can result in a sudden change in physical or cognitive symptoms, often impacting on a person's ability to function with family, friends and work. In the UK, a survey of people with MS (PwMS) on their experience of relapses found that 67% of people in paid employment took time off sick and 66% of people required additional support to undertake routine daily tasks following a relapse.

Management of relapses and exacerbations is one of the eight key priorities in the NICE Clinical Guidelines for MS. The guidelines state people having a relapse or exacerbation should be assessed to see if they need additional symptom management or rehabilitation, and whether their care needs have changed. The guidelines also recommend regular exercise but does not provide specific advice on whether exercise should be undertaken during a relapse. In order for PwMS to self-manage effectively whilst they are having a relapse, they need to be given clear information on what they can do to help with their recovery.