Epub: Benito-León J. Impaired health-related quality of life predicts progression of disability in multiple sclerosis. Eur J Neurol. 2012 Jun 28. doi: 10.1111/j.1468-1331.2012.03792.x.
METHODS: MSers were recruited in 13 outpatient clinics in Madrid, Spain. Baseline HRQOL was quantified using the Functional Assessment of MS (FAMS) and disability with Kurtzke expanded disability status (EDSS). A clinical meaningful deterioration of disability was defined as an increased of ≥1 point in baseline EDSS scores of ≤5.5 and an increase of ≥0.5 point in baseline EDSS scores of ≥6.0.
RESULTS: Out of 371 enrolled MSers, 61 dropped out during the 2-year follow-up. Of the remaining 310, 94 (30.3%) had clinical meaningful deterioration of disability. The odds of clinical meaningful deterioration of disability were higher as HRQOL decreased with a significant dose-dependant effect. Adjusted odds ratios were 2.61 [95% confidence interval (CI) 95% = 1.12-6.09], [middle tertile vs. upper tertile (reference)]; and 3.27 (95% CI = 1.31-8.18), (lower tertile vs. upper tertile).
CONCLUSIONS: The identification of those MSers with poor HRQOL may be important in assessing the risk of future disability progression. Clearly, impaired HRQOL should be one of the primary concerns amongst clinicians who provide treatment to patients affected by MS.
BACKGROUND: To determine the value of health-related quality of life (HRQOL) in predicting progression of disability in MSers over a period of 2 years.
“HRQOL is a broad multidimensional concept that usually includes self-reported measures of physical and mental health.”
METHODS: MSers were recruited in 13 outpatient clinics in Madrid, Spain. Baseline HRQOL was quantified using the Functional Assessment of MS (FAMS) and disability with Kurtzke expanded disability status (EDSS). A clinical meaningful deterioration of disability was defined as an increased of ≥1 point in baseline EDSS scores of ≤5.5 and an increase of ≥0.5 point in baseline EDSS scores of ≥6.0.
RESULTS: Out of 371 enrolled MSers, 61 dropped out during the 2-year follow-up. Of the remaining 310, 94 (30.3%) had clinical meaningful deterioration of disability. The odds of clinical meaningful deterioration of disability were higher as HRQOL decreased with a significant dose-dependant effect. Adjusted odds ratios were 2.61 [95% confidence interval (CI) 95% = 1.12-6.09], [middle tertile vs. upper tertile (reference)]; and 3.27 (95% CI = 1.31-8.18), (lower tertile vs. upper tertile).
CONCLUSIONS: The identification of those MSers with poor HRQOL may be important in assessing the risk of future disability progression. Clearly, impaired HRQOL should be one of the primary concerns amongst clinicians who provide treatment to patients affected by MS.
“Quality of life is something that is seldom directly raised during neurological consultations; we tend to talk around the subject. For example, we ask about mood, pain, sleep, day-to-day physical functioning, but never the question ‘How is your quality of life?‘. If you were asked this question by your neurologist how would you answer it? The perception of QoL is variable and changes depending on the stage of disease and level of expectation. For example, someone recently diagnosed with MS usually has anxiety about the future that may impact more on QoL than someone with established disease who is well adapted to their disabilities. In MS QoL is often linked to uncertainty about the future. This is why the more effective DMTs that have been shown to improve QoL make such a difference; when MSers with active MS are rendered disease activity free with DMTs they are often comment on how normal their lives have become: ‘I feel normal, my brain fog has cleared and my fatigue has gone, I can now face the future with more certainty.’ If only we knew what the future holds and whether or not these therapies will continue to hold the disease at pay and prevent SPMS; that is one of the grand challenges.”
Extra reading: Quality of life. HRQOL
Quality of life impacts on many medical issues, depression and anxiety about the illness, the MSer's support system from friends to home care relate to factors such adherence to drug therapy. Quality of life is more than the physical factors mentioned. I am fortunate that my neurologist keeps tabs on my academic career, my weightlifting, lectures me on my weight, is interested in my interaction with others and the state of my mental health – and she notes all this down. Also she is a generalist neurologist and MS is not her area of speciality, I stay with her because she is patient centred, warm and empathetic, I have back up arrangements to see a specialist MS neurologist should my circumstances change and other therapies might need to be prescribed, but I will still stay under the monitoring of my current neurologist because, quite frankly, I like her. The only thing that terrifies me is that she might retire!
re "well adapted to their disabilities": i doubt anybody can be well adapted when disability keeps getting worse
"i doubt anybody can be well adapted when disability keeps getting worse"I second this. I do seem to temporarily adapt during more stable periods. I start to think maybe I can live with this. Then things start getting worse again, which leads to distress, fear and more worrisome thoughts of the future. This cycle happens to me over and over. I never seem to adapt to the big picture, although I begin to see how people can adapt to things that at first seem unbearable. It isn't my experience that poor QoL predicts progression so much as that when I start progressing (even if it's not obvious to the neuro), my QoL takes a hit. What I wish for is a fairy godmother who could proactively suggest things to improve QoL. For example: "You might consider a scooter or some other mobility device. Your QoL (and your husband's) would be better if you weren't limited to the paltry distance you can manage to walk nor constrained by how unpleasant it is to walk any distance and how much you have to focus on walking to the exclusion of paying attention to anything around you." However, any improvement like this always seems to have to wait for the light bulb to go off in my dim head.