The use of quality of life measures in multiple sclerosis research

Nortvedt, Monica Wammen; Riise, Trond

doi:10.1191/1352458503ms871oa

Cited by 104 publications

(89 citation statements)

References 86 publications

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“…16,17 The 12-item Short Form Health Status Survey, version 2 (SF-12v2), standard form provides two summary scores: a Physical Component Score (PCS) and a Mental Component Score (MCS). General population standardized scores for both the PCS and MCS range from 0 (worst) to 100 (best), with a mean of 50 and a standard deviation of 10.…”

Section: Outcomementioning

confidence: 99%

“…It is recognized that an MS-specific HRQOL tool may be more responsive to small changes in MS disease course. 16,26 However, since this was not a clinical intervention study, the examination of larger changes over a 5-year period was sufficient. Finally, the decision to explore differences between groups of participants based on change in scores was not part of the original study design and lends itself to exploratory research.…”

Section: Mental Hrqolmentioning

confidence: 99%

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Change in the Health-Related Quality of Life of Multiple Sclerosis Patients over 5 Years

Janzen¹,

Turpin²,

Warren³

et al. 2013

International Journal of MS Care

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This study examined whether multiple sclerosis (MS) patients (N = 3779) experience change in their perceived health-related quality of life (HRQOL) over a 5-year period, and investigated baseline factors that may be related to change in HRQOL. Data from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry were used to address the study's research questions. Results for the physical and mental component scores of the 12-item Short Form Health Status Survey, version 2 (SF-12v2), indicated that most of the MS sample experienced no significant changes over a 5-year period. However, 40% and 36% of the sample experienced clinically significant declines in their physical and mental HRQOL, respectively, over the 5-year period. After controlling for baseline scores, having a lower education, having greater duration since disease diagnosis, not being employed, having a lower income, not receiving a disease-modifying therapy, and taking a greater number of prescription medications were significantly associated with a clinically significant decline in physical HRQOL. After controlling for baseline scores, not being married/partnered, experiencing a greater number of relapses, not being employed, having a lower income, and taking a greater number of prescription medications were significantly associated with a clinically significant decline in mental HRQOL. Overall, most of the MS sample remained stable in their HRQOL over time. However, approximately four out of every ten patients experienced a clinically important decline in their HRQOL. While the association was statistically significant, the sociodemographic and disease-related factors linked with decline did not strongly predict decline over a 5-year period. Int J MS Care. 2013;15:46-53.

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Section: Outcomementioning

confidence: 99%

Section: Mental Hrqolmentioning

confidence: 99%

Change in the Health-Related Quality of Life of Multiple Sclerosis Patients over 5 Years

Janzen¹,

Turpin²,

Warren³

et al. 2013

International Journal of MS Care

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“…In addition to physical disability, disease-related symptoms such as bladder dysfunction [5], sexual problems [5] and fatigue [6] strongly influence patients' quality of life. Several studies have shown that MS patients have markedly lower quality of life than the general population [1,2,7,8], and also lower than patients with epilepsy, diabetes [9], rheumatoid arthritis and bowel diseases [10]. MS may also influence lifestyles, including such factors as diet, leisure physical activity, smoking and alcohol consumption, which again are known to influence quality of life [11].…”

Section: Introductionmentioning

confidence: 99%

Multiple sclerosis and lifestyle factors: the Hordaland Health Study

2005

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This study compared multiple sclerosis (MS) patients (n=87) with the general population and with people reporting angina pectoris (n=109), asthma (n=1353) and diabetes (n=219) regarding health-related quality of life (SF-12), working status and lifestyle factors including smoking, alcohol consumption, body mass index (BMI) and leisure physical activity. The study was cross-sectional and included the birth cohorts from 1950 to 1957 living in Hordaland County, Norway in 1997. A total of 22 312 people participated, yielding a response rate of 65%. The MS patients had a high rate of smoking and a low mean BMI, despite lower leisure physical activity compared with the rest of the study population. This suggests that it may be advisable to increase the focus on smoking, physical activity and the balance between energy intake and use.

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“…The symptoms of Parkinson's disease that are most responsive to dopamine agonists are not those that bother patients most [16]. Measures of disease activity may not be the best indicator of the impact of multiple sclerosis on patients [17]. Recognizing the limits of clinical and pathological indices, assessing patients' quality of life is now a routine practice in therapeutic trials.…”

Section: The Therapy Versus Enhancement Distinction Also Obscures Whamentioning

confidence: 99%

Cosmetic Neurology: For Physicians the Future is Now

Chatterjee

2004

AMA Journal of Ethics

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Basic neuroscience and neuropharmacology are beginning to yield therapies for cognitive disorders. While we can eagerly anticipate treatments for dementing illnesses, stroke, traumatic brain injury, and developmental abnormalities, these very treatments raise uncomfortable questions. If we can improve cognitive systems in disease, can we also do so in health? Should we practice cosmetic neurology?The possibility of "better brains" has captured the imagination of the press, policy pundits, and ethicists [1-10]. With few exceptions, physicians have not contributed to these discussions, despite their central role in this unfolding drama [11,12].Cosmetic neurology includes the use of botulinum toxin to brush away wrinkles. However, it also alters how we function and feel, rather than just how we look. Many interventions to improve cognitive and emotional systems are available now, and others are on the horizon. The risks and benefits of newer medications remain to be worked out. However, we can assume that some version of these medications will be relatively efficacious and safe. The accompanying article on neuroethics by Martha Farah reviews the anticipated pharmacopeia of cosmetic neurology and the deep ethical concerns raised for individuals and society (also see [12]). The focus here is on the role of the physician in managing the use of cosmetic neurologic interventions.

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The use of quality of life measures in multiple sclerosis research

Cited by 104 publications

References 86 publications

Change in the Health-Related Quality of Life of Multiple Sclerosis Patients over 5 Years

Change in the Health-Related Quality of Life of Multiple Sclerosis Patients over 5 Years

Multiple sclerosis and lifestyle factors: the Hordaland Health Study

Cosmetic Neurology: For Physicians the Future is Now

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