Monday, 16 January 2012

Research: MS can influence the well being of Partners

Giordano A, Ferrari G, Radice D, Randi G, Bisanti L, Solari A; on behalf of the POSMOS study. Health-related quality of life and depressive symptoms in significant others of people with multiple sclerosis: a community study. Eur J Neurol. 2012 Jan. [Epub]

Background and purpose: 
Uncertain prognosis and modest treatment efficacy make multiple sclerosis (MS) a particularly difficult disease to adjust to for both patients and their significant others (SOs). Few studies have assessed health-related quality of life (HRQOL) and depressive symptoms in SOs of people with MS in the community. We assessed, and identified predictors of, HRQOL and depression in SOs of adults with MS.

Methods:  POSMOS (postal survey of self-assessed health in MS adults and SOs) is a longitudinal survey on a random sample of 251 people with MS in the Milan area. In 2010, SOs and contemporaneous controls completed the SF-36 and Chicago Multiscale Depression Inventory (CMDI).

Results:  Overall, 142 SOs (mean age 53.1 years; 50% women, 65% partners) and 120 controls (similar to SOs for sex and education, but older) participated.

By multivariable modeling of the SO plus control population, SF-36 vitality was lower in SOs (proportional odds ratio 0.45; 95% confidence interval 0.28-0.70), women (0.41; 0.27-0.64), and older subjects (0.98; 0.97-0.99). SF-36 mental health was also lower in SOs (0.62; 0.40-0.96) and women (0.43; 0.28-0.67). Regarding MS characteristics associated with HRQOL and depression in SOs, severe disability [Expanded Disability Status Scale (EDSS over 6.5)] had no effect, whilst depressive symptoms (pathologic CMDI) negatively influenced most SF-36 and all CMDI scores in SOs .

SOs had significantly lower vitality and psychological well-being than controls, identifying a burden in being the companion of a person with MS. This burden was unrelated to physical compromise but associated with depressive symptoms in MS the more depression in MS the greater impact was felt by their signficant other (partner, friend, etc. etc.).

The conclusions say it all. MS does not just take its toll on yourself but it can have an impact on the people that care for you most. Whilst it appears that is not so much the physical aspect that can affect your partners and carers, if you are depressed then it not only affects yourself but others around you.

Whats does an odds ratio of 0.98 95% confidence interval of 0.97-0.99 difference in older people mean for example. It means that there on the whole there is 0.02 difference between SOs of MS verse non Msers and that 95% of SOs of MSers people are between 0.01- 0.03 times lower than older SOs of non-MSers. So in this case not much of a difference if any for this subset of people


  1. It’s true. My MS not only impacts on me. It equally affects my parents, my sisters, my extended family and my friends. In fact, in some ways it’s probably harder for them to come to grips with because I’m the youngest in our family and I sense they often interpret the hardship of my disease being harder on me than what it is. It’s hard but at least I deal with it. I’ve never complained about being disabled by MS, though perhaps they may think I perhaps should be complaining.

    Truth is, when I see how hard the people around me are trying to contend with my disease, it makes me more determined to persevere. My family are always donating and raising funds for MS research. My best friends have direct debits made out to the MS Society. In their own way they are working hard to bring a tinge of hopefulness to this insurmountable conundrum called multiple sclerosis. It’s be good not have MS, but I can confidently say that in some ways we’ve all been brought closer together by a profoundly life-altering experience.

    This is why I take issue with assisted dying. By opting for voluntary suicide, in many ways, one is failing those who’ve worked tirelessly to support you. I marvel at the amount of MS’ers who will argue they have a right to have children, yet they also incontrovertibly support their own right to die when they choose so. Life doesn’t work that way, or at least, it shouldn’t do.

    MS is a nasty disease, and everyone suffering from it has died with the disease actively festering inside of them. That hasn’t changed for thousands of years and may still not for some years to come. But I will argue the key is to die with hope, not conform to defeatism like say Debbie Purdy and spend your remaining years campaigning for an overwhelmingly defeatist agenda. Scientists often talk about the MS community needing to manage its expectations, but I will argue the scientists need to encourage a sense of optimism. How about MS researchers actually asking MS’ers what they expect science. At least that way there will be a sense of dialogue and exchange of thoughts.

  2. @Tyler D. I completely agree with your point of view!

  3. Tyler D, hold on to this attitude

  4. Re: "How about MS researchers actually asking MS’ers what they expect from the science?"

    This part of what this blog is about; you will be amazed by some of the research proposals we have received from comments or emails from MS'ers. In addition, we listen to what you say.

  5. Re: "..but I can confidently say that in some ways we’ve all been brought closer together by a profoundly life-altering experience."

    With an attitude like this Tyler D is well on the way to becoming an MS Hero.

  6. Re: "... not conform to defeatism like say Debbie Purdy and spend your remaining years campaigning for an overwhelmingly defeatist agenda."

    Debbie Purdy's fight has given her a reason to live; she is an active campaigner and has become an accidental celebrity. I would be very surprised if she took up the option of going to Switzerland for assisted suicide. Let's hope she learns from her own experiences and realises that having MS and being disabled does not necessarily mean that you can't have a good quality of life.

    The real issue here is individual choice and being tolerant of others beliefs and decisions. This what underpins the success of modern society.


Please note that all comments are moderated and any personal or marketing-related submissions will not be shown.