Why is so little being done to tackle unemployment in MS? #PoliticalSpeak #MSResearch #MSBlog
"The elephant in the MS room is employment, or more importantly unemployment. In Europe approximately 50% of MSers are unemployed within 10 years of diagnosis; as the average age of MS disease onset is 30 years this mean that 50% of MSers are unemployed by the age of 40. By the time you need a walking aid (EDSS 6.0) the unemployment rate is ~85%. Some countries to better than others; in general wealthy countries with a well-funded welfare system tend to have programmes to keep MSers in work. What is surprising is that MS cause unemployment at relatively low EDSS scores, i.e. at a stage before MSers are 'physically disabled'. Why? Hidden symptoms are almost certainly the main drivers of early unemployment rates, i.e. cognitive problems, fatigue, depression and anxiety. People with MS rarely complain of cognitive problems early on in the course of their disease; they tend to compensate for cognitive problems, which results in cognitive fatigue. Put simply it takes more mental effort and energy to complete the same mental task as a normal person. Tasks which should take 5 minutes to complete take longer and consume much more energy; it is like having to run a marathon instead of walking a mile. In the so called knowledge economy this handicaps MSers; they simply can't keep-up with their peers and fall behind. So many of my patients tell me that when they get home from a full days' work they simply crash and are mentally and physically too tired to complete domestic chores. This forces them to neglect the latter and sets in motion a downward spiral. The stress of underperforming at work, and at home, results in anxiety and this may exacerbate or cause depression. It is therefore refreshing to see a Dutch research group below studying unemployment in MS. Hopefully this study will identify early predictors of unemployment and provide insights on how to prevent it. I suspect the a major predictor will be cognitive impairment."
"Some of you may find it horrifying that when you interrogate CISers (people with their first attack of MS) approximately 30-50% already have cognitive impairment in at least two cognitive domains. This means that pathological processes that underpin cognitive problems in MS are there from the start of the disease. This is why I am a big supporter of early effective treatment in MS; the sooner we treat MS and stop, or at least slow down, the accumulation of gray matter (the part of the brain where cognition resides) damage the better we are able to preserve cognition and hopefully 'employment'. I say hopefully, because we simply have not collected the relevant data to show this directly, all we can do it assume this is what we are doing with our therapies using proxies for employment such as quality of life and disability scores."
van der Hieleet al. The MS@Work study: a 3-year prospective observational study on factors involved with work participation in patients with relapsing-remitting Multiple Sclerosis. BMC Neurol. 2015 Aug 12;15:134.
BACKGROUND: Multiple Sclerosis (MS) is the most common cause of neurological disability in young and middle-aged adults. At this stage in life most people are in the midst of their working career. The majority of MS patients are unable to retain employment within 10 years from disease onset. Leading up to unemployment, many may experience a reduction in hours or work responsibilities and increased time missed from work. The MS@Work study examines various factors that may influence work participation in relapsing-remitting MS patients, including disease-related factors, the working environment and personal factors.
METHODS/DESIGN: The MS@Work study is a multicenter, 3-year prospective observational study on work participation in patients with relapsing-remitting MS. We aim to include 350 patients through 15-18 MS outpatient clinics in the Netherlands. Eligible participants are 18 years and older, and either currently employed or within three years since their last employment. At baseline and after 1, 2 and 3 years, the participants are asked to complete online questionnaires (including questions on work participation, work problems and accommodations, cognitive and physical ability, anxiety, depression, psychosocial stress, quality of life, fatigue, empathy, personality traits and coping strategies) and undergo cognitive and neurological examinations. After six months, patients are requested to only complete online questionnaires. Patient perspectives on maintaining and improving work participation and reasons to stop working are gathered through semi-structured interviews in a sub-group of patients.
DISCUSSION: Prospective studies with long-term follow-up on work participation in MS are rare, or take into account a limited number of factors. The MS@Work study provides a 3-year follow-up on various factors that may influence work participation in patients with relapsing-remitting MS. We aim to identify factors that relate to job loss and to provide information about preventative measures for physicians, psychologists and other professionals working in the field of occupational health.