I know I am stuck record, but part of the reason why this blog exists is to tell it how it is. We all know MS is a disabling disease and is associated with loss of quality of life. Social isolation is massive problem in MS; it gets worse with increasing disability and is associated with reduced quality of life.
The following study shows that the majority of pwMS had ‘participation restriction’, which not surprisingly increased with higher EDSS scores from 40% (EDSS<4) to 82% (EDSS>5.5). Social participation was more restricted than home integration; for example, fewer than 20% of pwMS were able to shop for groceries alone. Cognitive problems were more closely linked with participation restrictions than motor problems or physical disabilities; i.e. balance, gait and hand dexterity limitations.
The results of this study confirm how disabling MS is socially and supports our campaign to rebrand MS a preventable dementia. Please note an impact on social functioning is one of the core diagnostic features of a dementia.
Knowing this who wouldn’t want their disease treated early and effectively to prevent the downstream social consequences of MS?
I have uploaded the Community Integration Questionnaire that was used in this study. If you are interested you can complete it yourself. Please note this comes with a warning as it may inform you about the impact MS has had on your social life.
Cattaneo et al. Participation restriction in people with multiple sclerosis: prevalence and correlations with cognitive, walking, balance and upper limb impairments. Archives of Physical Medicine and Rehabilitation Available http://dx.doi.org/10.1016/j.apmr.2017.02.015
Objective: To calculate percentage of participation restrictions according to disability level in Multiple Sclerosis (MS) and to assess relationship between participation restriction, and cognitive, gait, balance and upper limb deficits.
Design: Cross sectional study
Setting: Rehabilitation unit
Participants: 105 people with MS and 20 healthy subjects (HS) were screened in Belgium and Italy.
Main outcome measures: The Community integration questionnaire was used to assess participation in Home, Social and Productive Activities. Percentages of people with MS scores lower than the 10th percentile of those of HS were calculated for each sub scale to categorize the persons with participation restrictions. Cognitive deficits (Symbol Digit Modalities Test), walking disability (25-foot walking test / EDSS), balance disorders (Bohannon Standing Balance Test) and manual dexterity (Nine Hole Peg Test), were recorded.
Results: 77% of participants showed participation restrictions, which increased with higher EDSS scores from 40% (EDSS<4) to 82% (EDSS>5.5). Social participation was more restricted than home integration with less than 20% of participants doing shopping for groceries alone. Cognitive deficits were more highly associated (r=0.60) with participation restrictions than balance (r=0.47), gait (r=-0.45) and hand dexterity (r=0.45) limitations.
Conclusions: Participation restrictions are present in MS and increase with disability level. However, the results also show that multiple sclerosis does not restrict participation in all domains. Participation restriction at home is less restricted compared to social participation. Cognitive disorders are more associated to participation restrictions than physical limitations