WHAT REALLY AFFECTS QUALITY OF LIFE IN MS?

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Results from the Trajectories of Outcome in Neurological Conditions (TONiC) study in MS have just been published – “Quality of life in multiple sclerosis is dominated by fatigue, disability and self-efficacy”.

If you want to read and keep a copy of the paper, until 1 July 2021 you can read or download it for free from this, link without any need to register or pay (thank you to Journal of Neurological Sciences):

The analysis uses detailed data from 5695 MSers from around the UK. As well as fatigue, disability and self-efficacy, it looked at spasticity pain, bladder problems and vision in a form of a path model. A model is useful for considering how things relate to one another; it doesn’t just produce a list of all the things that might be important, it tells you whether one factor is more ‘upstream’ and thus may be worth dealing with first.

So what turned out to be key in the list? A lot of clinical teaching would say disability is by far the main driver but that turns out to be wrong (maybe clinicians concentrate on what they can easily assess in their patients). The results are much more interesting:

Fatigue had the largest total effect.

It would have been very easy to underestimate the importance of fatigue because much of its effect was ‘behind the scenes’, acting mainly indirectly through other factors like disability and self-efficacy.

In other words, fatigue does affect quality of life directly, but it also makes disability worse and lessens self-efficacy, and those indirect effects powerfully reduce quality of life. We should be moving fatigue up the priority list for treatment.

After fatigue, the next most powerful factor influencing quality of life for MSers was disability. Not a surprise, but unexpectedly something else was almost equal in effect to disability.

Almost as powerful was self-efficacy. So what is self-efficacy? Your self-efficacy refers to the beliefs that you have about being able to act to deal with your MS to achieve the outcomes you want.

Responding to these findings will require better treatment options for fatigue, and research into ways to enhance self-efficacy. They also show that our understanding of what matters in MS care has to include evident factors like disability, but also invisible issues like fatigue and subtle but pervasive factors like self-efficacy.

The TONiC study is the largest clinician-verified study on quality of life in MS currently running in the world. It is examining the different factors which may influence quality of life to understand how we may improve it. The TONiC study group has fantastic support from sites around the UK.

Largest study of it's kind into MND hopes to improve the lives of patients  | Granada - ITV News
Prof Young is a neurologist based in Liverpool who started the MS service there in 1992 and has set up and co-ordinated the TONiC study.

Carolyn A.Young et al. Quality of life in multiple sclerosis is dominated by fatigue, disability and self-efficacy. Journal of the Neurological Sciences Volume 426, 15 July 2021, 117437.

Background and objective: Quality of life in multiple sclerosis (MS) reflects complex relationships between symptoms (fatigue, spasticity pain, and bladder or vision dysfunction), disability, health perceptions, and self-efficacy.

Methods: In this cross-sectional study, a self-report questionnaire pack of patient-reported outcome measures was collected from 5695 people with MS (pwMS) alongside clinical data from their neurologists. Each patient-reported outcome measure was converted to interval-scaled estimates following fit to the Rasch model. The patient-reported outcome measures, as well as perceived health, age, disease subtype and gender, were then subject to path analysis to analyse their relationships with quality of life (QoL), guided by the Wilson and Clearly conceptual framework.

Results: The final model explains 81.2% of the variance of QoL. Fatigue is clearly dominant, suggesting a means to intervene and improve QoL. The next most influential factors were disability and self-efficacy, which have similar effect levels. The model can be replicated for pwMS on disease-modifying therapy and is largely invariant for gender and disease subtype. Age had an insignificant effect.

Conclusions: In order to promote better QoL, MS care should include management of fatigue, interventions to ameliorate disability, and support to enhance self-efficacy. The range of skills needed for these treatments will require input from medical, nursing, therapy and psychology staff, so these findings provide evidence substantiating the need for pwMS to be provided with care by comprehensive multidisciplinary teams.

Prof Y

Consultant neurologist, Walton Centre. Honorary professor of neurology, University of Liverpool. Striving to do the stuff that matters. Wife, mum, gardener, traveller, lover of books and bonsai.

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14 comments

  • I always think that real life stories can give a better picture of how MS affects someone’s “quality of life”. This is a sad story, but I’ve seen similar ones over the years where a husband, brother etc has helped a loved one with MS end the suffering:

    https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwjbifro2JbxAhWRgVwKHTU4BigQFjAAegQICRAD&url=https%3A%2F%2Fwww.mirror.co.uk%2Fnews%2Fuk-news%2Fdevastated-daughters-watched-mum-starve-24256595&usg=AOvVaw1PW2GGLU9n2cIWOk4tQ4y-

    My neuro gets it. He calls MS an insidious disease. The gradual loss of functions with the gradual loss of life’s pleasures and no future to look forward to. MSers can recall the QoL they had before so have something to compare with the post diagnosis QoL. I have a friend with cerebral palsy who has used a wheelchair since childhood. Her quality of life is okay (according to her), but she tells me that she’s never known any different and her position is the same as it’s always been.

    I’d say that the biggest impact on an MSer’s QoL is psychological. I’ve walked into the neuros waiting room and seen MSers with very advanced MS slumped in a wheelchair with a spouse or family member who looks drained. It takes me a couple of days to address the fear in my head ie that will be you one day 5, 10, 20 years time.

    Therapies to stop the disease in its tracks will have the biggest impact on an MSers QoL. The MSer can then think that they can build a life around my current disability / issues without the fear of continuous worsening. Until this happens, hope is gradually whittled away and the fear of an horrific future (bedridden, carehome…) leads some to choose death as a better option than the QoL offered by MS.

  • That’s really interesting and puts into words what we instinctively know. I’m aware that being tired/fatigued has an impact on my physical capability. And yes self efficacy is incredibly important – it can be so frustrating not to have this. Good/interesting to see that age was not a factor.

  • Thank you for this. The nice idea of having ‘better treatments options for fatigue’ will have been read with a derisive snort by many of us with long-term MS. ANY widely-available and effective treatments would be a great start.

    The point about clinicians (and researchers) liking things they can measure is a good one, and it is also the case that clinicians like the things they can do something about. MS fatigue falls into neither category: no wonder clinicians can (or so I have heard) sometimes be as quick to downplay it as non-MS civilians are. After all, everyone gets tired sometimes, no? 🙂

  • The biggest way to address self-efficacy is finally getting rid of NICE/insurance guidelines and allowing MS patients to choose their own treatments. Imagine how hopeless and frustrated you would feel to be diagnosed with a disease as terrible as MS and then have your neurologist refuse to prescribe you the most effective treatments because he wants you to fail up an escalation pyramid, or tells you that you have “mild MS.” Merely knowing that there is a better drug that you are being denied for whatever perverse reason is enough to cause feelings of despair. There is a lot of peace that comes with knowing you and your doctors have done absolutely everything that you can to fight the disease, even if progression continues.

  • The link to the paper’s free 48-hour download does not take one to any such option, as far as I can see…only the usual paid versions. Thanks.

  • Another study that really tells us nothing new. Yep, fatigue is a consistent life-ruiner, in my experience. I think the hopelessness of the disease progression overwhelms at times, and the continual losses that one must adjust to and plan for. Of course all living beings are on a hopelessly progressive course to the end point but the speed and unpredictability of MS makes it harder to manage. My personal annoyance is the feeling that there is NOTHING I CAN DO to make it better. I exercise for months, get fit, only to lose any strength or fitness over a relapse and have to start from the beginning again. My bladder just up and died. I mean, really?
    In any case, everyone who lives with or adjacent to MS knows the results of this study. Seems the study money could have been better spent figuring out a way to quell cognitive fatigue.

    • You’re right of course, but I didn’t read it as much as a ‘symptoms-report’ for us MS’rs, but as a scientific way to communicate the ‘experience’ to others.

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