Sunday, 19 June 2011

Determinants of Quality of Life in MSers

Fern├índez et al. Patient characteristics and determinants of quality of life in an international population with multiple sclerosis: Assessment using the MusiQoL and SF-36 questionnaires. Mult Scler. 2011 Jun 13. [Epub ahead of print]

Background: MS has psychological and socioeconomic consequences that affect quality of life (QoL) as much as physical disability. This study was performed to determine the clinical and sociodemographic factors affecting QoL in a large international study using the MS International QoL (MusiQoL) questionnaire and SF-36. Results: In total, 1992 patients from 15 countries were enrolled with an average age of  42yrs. The analyses identified (1) lower educational level, (2) higher EDSS score, i.e. disability, (3) cognitive impairment, (4) being single and (5) shorter time since last relapse as significant predictors of lower QoL. In comparison (1) older age, (2) female sex, (3) higher EDSS score, (4) shorter time since last relapse and (5) receiving current MS treatment were significant predictors of lower QoL on the physical component of the SF-36. The SF-36 mental component summary score was linked to (1) occupational status, (2) inpatient/outpatient status, (3) time since last relapse, and (4) whether the patient was receiving MS treatment. Conclusion: Sociodemographic and clinical factors are linked to QoL in patients with MS. Interventions that affect these factors might be expected to influence QoL.

"No surprises here; common sense if you ask me. Being aware of these factors may help MSers focus on improving their QoL. As healthcare professionals we can help by asking about these factors, bringing in help when necessary and most of all treating aggressively in the hope of preventing disability. The latter underpins a lot of the factors linked to poor QoL. Does anybody disagree?"

CoI: Nil

3 comments:

  1. Nothing annoys me more that the money wasted on quality of life type research.

    A 5 year old child could come up with the answers which these researchers take years to cover.

    Let's have 3 rankings - bad, very bad, XXXXing bad.

    It doesn't take a genius to work out tht most MS symptoms (bad fatigue, immobility, incontinence, ED, swallowing problems) fall into the XXXXing bad ranking in terms of impact on quality of life. I can only think of pins and needles, sensory disturbance as falling into the 'bad' ranking.

    But MS is the sum of all these parts. These various symptoms all / mostly come together, particularly for progressive patients.

    These types of research have no benefit to people with MS. Neuro-protection and repair should be the only research projects that are funded.

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  2. This is an interesting subject. I have progressive MS and am somewhat disabled. My quality of life is hindered by my disease for sure but I don’t feel I’m deprived of things that can make my life better. I suppose I’m a university educated person from a middle-class background. My extended family are very supportive in terms of campaigning for MS and raising money through charity activities by sports and ‘cake breaks’ (etc). All of us are seriously clued up on MS and write to MPs and Parliament asking for better care for PwMS.

    I’ve struggled with this disease and have to say my main gripe has been with neurologists who I feel don’t care enough about what I’m dealing with. I feel that if a person like me, who can articulate their thoughts and demands clearly, is having trouble communicating effectively with the health care system then I dread to think what those from more deprived backgrounds have to endure. Economically deprived people are not only dealing with an unconscionably serious disease, but also an inefficient health system that does not place them at the centre of care.

    I don’t believe in private health care, just as I do not believe in private education, but I do think that NHS doctors and consultants need to be more proactive. Yes, MS is untreatable for many people, but the monitoring of the disease is very poor. I feel that annual MRI scans and such tests should be mandatory for all MS sufferers just so that the patient remains on the consultant’s radar and he/ she has empirical proof of degeneration and particular areas where damage is taking place. Believe me; this does not happen for the vast majority of MS patients.

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  3. I feel a need to support the need for less cosmetic surveys into the “happiness” of PwMS and more investment for effective treatments into nerve protection and repair. I’m still reeling from the BBC documentary on assisted suicide shown earlier this week and feel angry at the amount of attention given to the hopelessness of multiple sclerosis and the subsequent lack of media coverage given to imminent therapies that may curtail damage caused by the disease.

    Quality of life for those with MS is highly compromised by the problems caused by the illness. That’s a given. Ask anyone living with the disease and they will tell you that. I wish neuroes would spend more time talking to their patients on how they feel and less on trying to glean insights through robotic surveys.

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