Abstract

BackgroundAlthough it is well known that people with multiple sclerosis (PwMS) retire from work early, little is known about how long-term changes in functioning and perceived impact of multiple sclerosis (MS) interact with sustainability of employment. ObjectiveTo explore changes in functioning and in perceived impact of MS over 10 years, in relation to employment status of PwMS. MethodsIn order to measure functioning, data on activities (walking ability, fine hand use, personal activities in daily living); participation in activities of everyday life (domestic, outdoor and leisure activities); body functions (cognitive function, fatigue, depressive symptoms); and perceived impact of MS were collected in 116 PwMS at baseline and at a 10-year follow-up. Ten-year changes were explored with the participants divided into four subgroups based on employment status at the follow-up: 1) full-time work at the 10-year follow-up; 2) part-time work at the 10-year follow-up; 3) declined from working at baseline to not working at the 10-year follow-up; and 4) not working at baseline nor at the 10-year follow-up. ResultsPatterns of change in functioning for PwMS who worked showed a more apparent deterioration over 10 years among those working part-time with regard to walking ability, fatigue and depressive symptoms. Members of the subgroups who declined from working at baseline to not working at the 10-year follow-up or who were working neither at baseline nor at the follow-up deteriorated the most in functioning. The subgroup whose employment status declined from baseline to follow-up showed a significant decrease in cognitive function and an increase in perceived physical impact of the disease. All subgroups experienced a deterioration in walking ability over the 10-year span, and in all subgroups a majority had limited fine hand use over the span of the study period. ConclusionThe deterioration in functioning was most apparent in those PwMS whose employment status declined from working at baseline to not working at the 10-year follow-up. Close monitoring of work situation and frequency of activities and participation in everyday activities, as well as recurrent training of functioning, are suggested for maintaining a high level of functioning and work status, or for supporting transition to an appropriate number of working hours.

Highlights

  • Many people with multiple sclerosis (MS) retire from work rela­ tively early (Berg et al, 2006, Brundin et al, 2017)

  • The difficulty in finding balance might be due to the concurrent pre­ sence of impairments, activity limitations and participation restrictions caused by MS (Johansson et al, 2007), of which several have been reported to be associated with a declining employment status, e.g., limited walking ability (Goldman et al, 2013), limited fine hand use (Chruzander et al, 2016), fatigue (Simmons et al, 2010, Boe Lunde et al, 2014), impaired cognition (Honan et al, 2015) and depressed moods (Boe Lunde et al, 2014)

  • Of them 28% and 23% worked fulland part-time at the 10-year follow-up, respectively, 24% declined in employment status from working to not working, and 25% were not working at baseline nor follow-up

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Summary

Introduction

Many people with multiple sclerosis (MS) retire from work rela­ tively early (Berg et al, 2006, Brundin et al, 2017). The difficulty in finding balance might be due to the concurrent pre­ sence of impairments, activity limitations and participation restrictions caused by MS (Johansson et al, 2007), of which several have been reported to be associated with a declining employment status, e.g., limited walking ability (Goldman et al, 2013), limited fine hand use (Chruzander et al, 2016), fatigue (Simmons et al, 2010, Boe Lunde et al, 2014), impaired cognition (Honan et al, 2015) and depressed moods (Boe Lunde et al, 2014). Close monitoring of work situation and frequency of activities and participation in everyday activities, as well as recurrent training of functioning, are suggested for maintaining a high level of functioning and work status, or for supporting transition to an ap­ propriate number of working hours

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