#ClinicSpeak & #ResearchSpeak: community integration

How integrated are you in your community? How has MS affected you socially? #ClinicSpeak #MSBlog #MSResearch

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.

Interventions: Not applicable

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

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.


  • Oh hell. This is my dilemma. I'm a professional singer and my lower abdominal muscles have let me down. I can't stand for more than 10 minutes without extreme discomfort. Top level choirs dont accommodate people with physical limitations and this is distressing. I am slowly dying of grief. I'll be fine, but not fine at all. My legs are good and strong and I'm lucky, I know. I have excellent treatments. But I just want to be a normal person. I'm not, this horrible disease gets in the way. My cognitive defecits really kick in mwhen im in great discomfort. I dont want a lot. Just participation. 30 years of studying and practicing and immersion in the world of serious music is worth my discomfort, but there are limits and it would be so much better if professional conductors understood that people have problems and that these problems can be managed.

    • I was a musician too – a teacher mainly. I played flute and sax. I can't hold either of them and my breathing is shot to pieces by my muscle control too. I also have a cognitive fatigue that doesn't allow me to listen to music anymore, as it physically shuts my body down. Yep, it's totally crappy. And I hear you about not being accommodated. It's not pleasant.

      You're not 'normal' – you're amazing – you're a musician, which most of the planet isn't. But yes, you are right when you say you don't want a lot. I don't think you're asking much at all to be able to participate.

      My way of dealing with it has been to look for other ways to use my music. I have a very young granddaughter who is learning to play the piano and is really quite advanced for her age. I have an app on my iPad called Notion, a high level composition tool. I use my music skills to compose pieces for her that are for her skill set. It tests my skills to be able to write something that shows her off to her best, at the stage she is. It's not what I had, but it's better than nothing.

  • Unfortunately I do not have access to the full text version of this paper – but from a quick look at the abstract it looks like fatigue was not measured or adjusted for.
    And what would patients with MS say limits them most?

    • OK, so now I have read the questionnaire I understand it better… it looks like an instrument developed for head injury and then one can seriously question the validity of such an instrument when used in another disease.

  • Don Giovannoni, you know what my views are with regard to your campaign to get us hooked on neo-DMTs. I was flabbergasted that in a post yesterday you were fishing to target infants with MS in your ambitions to 'treat' MS. That's not cool, bredrin, especially when you are not entirely 100 per cent sure why MS even happens.

    Yo, I dunno, so bring on the funky astronomical piano, because I wanna sort you out, Don Giovannoni.

    I wanna collaborate with you. From now on you have to make a point that our Prime Minister, Teresa May, had a mother with crippling MS.

    You heard me, bro. Our PM's own mum had severe MS and was massively disabled by it. Teresa May has seen the cruelty of MS first hand, yet she has upheld vexatious austerity cuts for health and social care. This woman is a so-called vicar's daughter, Don Giovannoni. God ain't pleased, fam.

    That kid-carer you posted about the other day shocked me. I wanna help, Don Giovannoni. From here on we need to shame Teresa May. Make a point of highlighting May's connection to MS. When you lobby, mention it. Tell the international community. Post on it. Make May feel guilty, or at least embarrass her. Michael Moore does it all the time.

    Too under the cosh, geezer.

    • Brilliant tell, Dre. You are right, as the Daily Mail says: "And just a few months later Mrs May's mother Zaidee, who suffered from multiple sclerosis, also died. Mrs May was only 25 at the time."

      I agree with Dre. We need to highlight Teresa's connection to MS. Make a big deal of it. This is an opportunity.

    • My gosh Dre. This must be your finest moment. Thank you and I so agree with you.

      Prof G, we need a plan.

    • Maybe the PM and her mum were not on speaking terms or the PM is just a cold fish and doesn't give a damn, bro.

  • I think the survey misses out interactions that can be found in other ways, and the level of involvement you can have in things
    – I don't physically shop, do the housework and so on, but I have a lot of input into what is bought and what happens
    – I volunteer extensively, and most of it is done through telephone meetings and email. I don't need to leave my house.
    – I have a big connection with people over social media
    – I also take online university courses that are engaging ones – not just learn by yourself – so I'm involved in a network of discussions with other people through that.

    I'm pretty disabled from my MS and I'm only out of bed 7 or 8 hours a day. However, I have been able to build a life that is as socially engaged as I want, and that is intellectually stimulating. Life isn't just about leaving your home, getting out and meeting people. The form of cognitive fatigue I have doesn't make that possible. I think that the survey starts from a bias of how people are "expected" to function in society, a norm that may not be possible. I did my scores and it seemed pretty depressing, but my life is anything but.

    • I completely agree with all your points. This particular survey would suggest I am isolated / not engaged in the wider world because it has a very limited view of engagement. It also uses terms like "usual" that is not necessarily relevant for PwMS where our health can fluctuate.

      Social media, MS forums and e-messaging mean you don't have to see people face to face to be regularly and deeply connected to them. I also volunteer – including doing project work so I can flex my time around MS fatigue.

      A more nuanced survey might be useful for PwMS but, as Murdiesmum and I have found, this one can give a bleak and inaccurate picture because the survey authors have a blinkered view of community engagement.

By Prof G



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