The MS@Work study: a 3-year prospective observational study on factors involved with work participation in patients with relapsing-remitting Multiple Sclerosis

Abstract

BackgroundMultiple 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/designThe 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.DiscussionProspective 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.

Social disadvantages associated with myasthenia gravis and its treatment: a multicentre cross-sectional study

“…22 While at work, individuals are stimulated by physical and mental activities 9. Job loss is reportedly associated with worse self-perceived HRQOL and increased adverse health behaviours 22. In the patients with MG in the present study, experiences of unemployment or unwilling job transfers were consistently significantly correlated with the perception of reduced social positivity and low HRQOL scores.…”

“…22 While at work, individuals are stimulated by physical and mental activities 9. Job loss is reportedly associated with worse self-perceived HRQOL and increased adverse health behaviours 22.…”

Caregiver strain among life partners of persons with mild disability due to relapsing-remitting multiple sclerosis

“…This study recruited persons with MS from 16 MS outpatient clinics in the Netherlands in the context of the MS@Work study, a prospective longitudinal study on work participation in persons with relapsing-remitting MS (van der Hiele et al, 2015). The criteria for inclusion were a diagnosis of relapsing-remitting MS according to the Polman-McDonald criteria 2010 (Polman et al, 2011), 18 years and older and having a paid job or within three years since the last past job.…”

Association of Unemployment and Informal Care with Stigma in Multiple Sclerosis

“…28 The information collected in the SLNCC focused on Canadians' experience with chronic neurologic conditions, including effect on quality of life, work, time of diagnosis (which usually occurs between 15 and 40 years of age), approximately 85% of people are diagnosed as having relapsing-remitting MS. 2 Multiple sclerosis causes both physical and cognitive impairments, and it is the leading cause of neurologic disability in young adults during the primary productive time of their life. 2,8 As such, MS exerts a significant burden not only on patients but also on their family members and friends, health care systems, and society. Research suggests that between half to two-thirds of people with MS leave employment within 10 years after disease onset.…”

“…In particular, it has been suggested that direct work productivity loss (ie, the value of production forgone due to morbidity or mortality) in people with MS that is due to MS accounts for nearly half the cost associated with MS. 12,15 Besides the financial implications associated with direct work productivity loss in MS, stopping work can have a negative effect on overall quality of life of people with MS, 16 as well as on their sense of usefulness, satisfaction, and self-esteem. 8 Moreover, employment has been suggested as a potential public health intervention for people with MS. 17 Therefore, understanding factors that may contribute to retaining people with MS in the workforce, and targeting those that are modifiable, is important not only for health care and public health professionals but also for policy and decision makers to improve work productivity and health outcomes, including quality of life, of people with MS in Canada.…”