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.
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.
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.