This study looked at how often people reported their relapses and what effect their relapses had on their health, work and relationships.
How was the study carried out?
The researchers surveyed people in the UK with relapsing remitting MS (RRMS) who had started a disease modifying treatment (DMT) more than 36 months before screening. They also collected data on MS relapses and treatments over three years from medical records.
What were the results?
103 people with RRMS completed questionnaires. The researchers found that they under-reported their relapses to health care professionals, with 28 per cent of respondents failing to report their most recent attack and 46 per cent declaring they had failed to report an attack in the past.
During their most recent relapse, 67 per cent of those in paid employment reported taking time off sick, 48 per cent reduced their working hours temporarily, and 41 per cent worked reduced hours and took time off sick.
66 per cent required additional support to undertake routine daily tasks during their most recent relapse. A range of effects of relapse which cannot be measured in financial terms were also reported, including effects on physical abilities, mental health and family roles and relationships.
What does this mean for people with MS?
This study provides an insight into the experience of relapse early in the treatment of RRMS. The comparison of surveys with documented reported relapses reveals some deficiencies in the recording of relapses. The researchers conclude that the reporting and documentation of relapses needs to improve if relapse reduction is to remain a key goal of MS treatment.
Why is it important to report relapses?
As the study suggests, not reporting relapses can have serious consequences on your physical and mental health, on your work and on your family and relationships.
“Even minor relapses have an impact on your physical and psychological well being,” says Dr Martin Duddy, who lead the research. “We need to have a clear picture of whether or not people are having relapses, as they have an important role in assessing whether they need treatment and whether that treatment is working.”
Professor Gavin Giovanonni, Head of Academic Neurosciences at Barts in London, agrees. “Many people with MS have symptoms such as tingling in the arms and legs but don’t think of them as being ‘serious’ relapses. But if they don’t report them, their health professionals can’t document them, and this might mean that they don’t get access to the treatments that might improve their long-term health.”
- Multiple Sclerosis and Related Disorders, 2014; 3 (4): 450-456 Read the full study The UK patient experience of relapse in multiple sclerosis treated with first disease modifying therapies