The drug companies seem to focus on relapse rate when they test new medicines for MS. Often, quality of life (QOL) is not even mentioned.
But studies have shown that the QOL of people with MS is often negatively affected by taking medication, particularly for certain classes of MS drugs like the interferons.
The paradox is that people with MS appear to tolerate feeling worse while they try to get better! Here at the NEU, we agree with experts like Professor Gavin Giovannoni at Barts Hospital in London and Professor Helmut Butzkueven at the Royal Melbourne Hospital in Australia that QOL is a key outcome for people with MS that should be considered and reported.
What QOL really means is one’s experience of life. That is, is life good, really good, ordinary or terrible? The average person really understands what this health outcome means.
The new HOLISM study
So one of our big projects at the NEU, as part of the HOLISM study, has been to see what factors, in our large international sample of people with MS, determine their QOL.
We know that people who for example are married or otherwise partnered, who are working, who have more social support, and whose disease has not progressed much, feel better.
And our study confirmed that. But we were also really interested in the day-to-day lifestyles of people with MS. To see whether how they live affected their experience of life. In our paper, published in the high-ranking neurology journal, BMC Neurology, the HOLISM study investigators explored associations with physical QOL after taking into consideration differences in stable factors like marital status, employment and disability level.
We showed that more exercise, not smoking, a healthy plant-based diet, having fewer health conditions other than MS, not taking a disease modifying drug, and maintaining a normal bodyweight were all associated with better physical QOL. Similar results were found for mental QOL with meditating once a week or more also having a strong association.
What does it mean?
Lifestyle is an important part of the equation in improving QOL in people with MS. But, it is important to remember that it is pretty complex. Many factors contribute to QOL.
These include both psychological (e.g., stress, social connectedness, mood, locus of control) and biological (eg., immune function, disease progression) factors.
By adopting a healthy lifestyle, it is quite possible that not only is the disease positively affected, but people influence their sense of control over the illness. This influences their QOL indirectly.
So how we live determines how we feel about life. Whether we experience it as great, good, ordinary or awful. Now that is a pretty powerful prescription for many of us who are not living so well. Change our habits for the better, and we start to feel better. A healthy life is a happy life!
Professor George Jelinek