But there is a lot to be said for the forces of the disease itself, which can press up against the living part and the quality of that living. Not every day of any life is going to be sunshine and Santa Claus. There are going to be good days and not-so-good days in everyone’s every days. When lassoed into one of those lesser days, I find it important to remember that it’s okay to not be okay. Like many of you, however, I sometimes need a little more than a friendly reminder that MS is having a real and measurable effect on the quality of my days. That’s why I was intrigued to read a recent research paper on not only quality of life with MS but also the fact that there are two measures of said quality.
Physical vs. Mental Quality of Life
The paper, published in the journal Neurology, divides health-related quality of life (HRQoL) into two categories: physical and mental. The study followed 4,888 people diagnosed with MS — 81 percent of whom were women — using what is known as a Rand-12 form, a short questionnaire that seems to work well for people like us. The mean age at diagnosis was 41.7. The study participants were followed for nearly two decades and filled out a whopping 57,564 of these HRQoL questionnaires between 1 and 27 years after their MS diagnosis. That’s some bunch of data to sift through! In the end, the researchers found that the two types of HRQoL (physical and mental) were adversely affected by different sets of factors. Those who reported their physical HRQoL lower over the period were diagnosed at an older age, experienced more significant physical impairments, and lived with more severe fatigue. Lower mental HRQoL was associated with two factors: lower income levels (less than $50,000 per year) and the lack of post-secondary education.
How Might This Information Be Used?
This longitudinal approach to MS and HRQoL could prove helpful for medical professionals as they help patients through the first few years after diagnosis. If, for instance, someone exhibits traits associated with physical quality of life issues (older and more fatigued, let’s say), a stepped-up program of physical exercise and strengthening may curtail those longer-term tendencies. The same is true when it comes to mental issues arising among lower-paid individuals diagnosed with MS. Long-term, longitudinal studies may seem like a blurred, long-exposure photo of a person’s (or group of people’s) life. What they really are, upon skilled review, is not unlike hurricane modeling: You look at what factors have contributed to the movement, strength, and damage of a storm and apply those factors in an ever-layering fashion until you can more accurately predict their course. As with storm forecasting, it’s not just knowing where it’s going to hit and how hard that is most important. It’s what people do with that knowledge in making plans for their immediate and future safety, well-being, and in this case, health-related quality of life. Wishing you and your family the best of health. Cheers, Trevis
