Evidence-based measurement in multiple sclerosis: the psychometric properties of the physical and psychological dimensions of three quality of life rating scales

2003 ◽  
Vol 9 (4) ◽  
pp. 411-419 ◽  
Author(s):  
A Riazi ◽  
J C Hobart ◽  
D L Lamping ◽  
R Fitzpatrick ◽  
A J Thompson

The selection of measures of quality of life used in clinical trials of multiple sclerosis (MS) should be evidence-based. Head-to -head comparison of measures facilitates the selection of measures. The aim of the study was to compare the psychometric properties of the physical and psychological dimensions in three measures of quality of life to aid choice of the most appropriate scale for use in clinical trials of MS. O ne hundred and twenty-one people with MS (rehabilitation =57; steroids =64) completed a selection of health measures before and after treatment. The psychometric properties of three measures of physical function (MSIS-29 physical, SF-36 physical functioning, FA MS mobility) and three measures of psychological function (MSIS-29 psychological, SF-36 mental health, FA MS emotional well-being) were compared by examining data quality, scaling assumptions, acceptability, reliability, validity and responsiveness. Physical (0.63- 0.71) and psychological (0.70-0.75) scales were substantially correlated indicating they measure related constructs. The MSIS-29 physical and psychological scales satisfied all criteria for internal consistency reliability (physical =0.91; psychological =0.89) and validity. The SF-36 physical scale had a notable floor effect (20%). The FA MS mobility scale had lower reliability (a=0.78) compared to other measures. The MSIS-29 physical (effect size=0.91) and psychological (effect size =0.62) scales were the most responsive. In these three samples, the MSIS-29 had better measurement properties for combined physical and psychological health than the SF-36 and the FA MS.

2021 ◽  
Vol 13 (1S) ◽  
pp. 45-49
Author(s):  
M. E. Guseva ◽  
O. V. Matvievskaya ◽  
A. N. Boyko

Objective: to study the effectiveness of art therapy methods in the complex treatment of neuropsychological disorders and quality of life improvement in patients with relapsing-remitting and secondary-progressive multiple sclerosis (MS).Patients and methods. A group of 42 patients (5 men and 37 women, mean age 32.9 years, mean EDSS severity 3.8 points) with MS underwent outpatient continuous active art therapy cycle. The mean group training cycle duration was six months. The comparison group included 15 age- and sex-adjusted individuals without neurological disorders. Tests on various drawing topics were carried out before and after a three-month therapy course. We used Hospital Anxiety and Depression Scale (HADS) to assess the severity of anxiety and depression and the SF-36 scale to evaluate the quality of life (QoL).Results and discussion. Before the art therapy start, light blue, yellow, pink, blue, and green colors prevailed in the drawings. There was no predominance of any color depending on MS severity or course. The green color predominated in this test in the control group, and the light blue color was significantly less represented. The art therapy course did not lead to a significant change in the severity of MS according to the Expanded Disability Status Scale (EDSS). After the art therapy course, the color scheme of the drawings was mainly represented by red, light blue, green, yellow, and blue colors. In addition, a red-orange color appeared in the drawings, which was completely absent before the course. Positive trends were noted according to HADS: a decrease in anxiety by 23% and depression by 19%. The physical component of QoL assessed by the SF-36 scale did not change substantially, but the psychological component significantly improved by 11%.Conclusion. The predominance of light blue color observed in MS is associated with damage to the nervous and musculoskeletal systems, and blue color – with psychological problems and depression. However, after a course of art therapy for MS, red, red-orange, yellow, and green colors representation increased significantly, which indicates an increase in positive attitude, a decrease in the level of depression, and an improvement in QoL.


Author(s):  
Wilma M. Hopman ◽  
Helen Coo ◽  
Cathy M. Edgar ◽  
Evelyn V. McBride ◽  
Andrew G. Day ◽  
...  

Background:Much research has gone into the assessment of function and health-related quality of life (HRQOL) in those with multiple sclerosis (MS). The Medical Outcomes Study 36-item short form (SF-36) has been widely used in this population but current recommendations are that it be supplemented with condition-specific measures such as the MS Quality of Life Inventory (MSQLI) and the MS Functional Composite (MSFC). The goal of the baseline component of this study was the measurement of generic and condition-specific HRQOL, and the identification of factors associated with these outcomes.Methods:HRQOL was assessed at the baseline phase of a longitudinal study. Participants completed the assessment during their regularly scheduled clinic visit.Results:300 of 387 eligible patients agreed to participate, for a response rate of 77.5%. Age ranged from 22 to 77 years, while duration of MS ranged from 1 to 47 years. Mean SF-36 scores were well below age- and sex-adjusted normative data. Only 240 completed the MSFC component. Higher EDSS, use of support services, pain medications, clinical depression and antidepressant use were associated with poorer HRQOL, while higher income and education were associated with better HRQOL.Conclusions:There is a substantial burden of illness associated with MS when compared to normative HRQOL data. This was more pronounced in physically- than in mentally-oriented domains. Assessment of HRQOL provides a valuable complement to the EDSS by providing information about the patient perception of function and HRQOL beyond that which can be obtained by physical assessment alone.


Author(s):  
Robert M. Herndon

This chapter discusses the challenges involved in measuring disease activity and progression in multiple sclerosis and how different aspects of the disease are measured in clinical trials. Metrics have been developed to assess multiple aspects of the disease., These include, in addition to more global instruments, measures of specific functions such as, cognition, mobility, quality of life, fatigue, and so on. These scales are discussed along with their strengths and weaknesses.


2008 ◽  
Vol 14 (1) ◽  
pp. 129-135 ◽  
Author(s):  
R.W. Motl ◽  
J.L. Gosney

Using meta-analytic procedures, this study examined the overall effect of exercise training interventions on quality of life (QOL) among individuals with multiple sclerosis (MS). We searched MEDLINE, PSYCHINFO and CURRENT CONTENTS PLUS for the period of 1960 to November 2006 using the key words exercise, physical activity and physical fitness in conjunction with QOL and MS. We further conducted a manual search of bibliographies of the retrieved papers as well as literature reviews and contacted study authors about additional studies. Twenty-five journal articles were located and reviewed, and only 13 provided enough data to compute effect sizes expressed as Cohen's d. One hundred and nine effect sizes were retrieved from the 13 studies with 484 MS participants and yielded a weighted mean effect size of g = 0.23 (95% CI = 0.15, 0.31). There were larger effects associated with MS-specific measures of QOL and fatigue as an index of QOL. The nature of the exercise stimulus further influenced the magnitude of the mean effect size. The cumulative evidence supports that exercise training is associated with a small improvement in QOL among individuals with MS. Multiple Sclerosis 2008; 14: 129—135. http://msj.sagepub.com


2009 ◽  
Vol 11 (1) ◽  
pp. 17-24 ◽  
Author(s):  
Deborah M. Miller ◽  
Craig Kollman ◽  
Andrea Kalajian ◽  
Paul W. O'Connor ◽  
R. Philip Kinkel

A secondary analysis was undertaken to compare patient-reported outcomes (PROs) of individuals who did and did not convert to clinically definite multiple sclerosis (CDMS) approximately 5 years after their first clinically isolated syndrome (CIS). Patients included in the analysis were participating in a long-term extension (called CHAMPIONS) of the Controlled High-Risk Avonex® Multiple Sclerosis Prevention Study (CHAMPS). The Multiple Sclerosis Quality of Life Inventory (MSQLI), a battery including the Short Form Health Status Survey (SF-36) and nine disease-specific scales, was administered to participants 5 years after their initial symptoms suggestive of MS (randomization into the CHAMPS study). Of 203 CHAMPIONS patients, 188 (93%) completed the MSQLI at enrollment into this extension study. Of these, 79 (42%) converted to CDMS. Statistically significant differences (P < .001) between those who did and did not convert to CDMS were found for 4 of the 11 MSQLI scales: the SF-36 Physical Component Summary, the Modified Fatigue Impact Scale, the Pain Effects Scale, and the Bladder Control Scale. Trends not meeting our criteria for statistical significance (P > .001 but < .01) were observed for the SF-36 Mental Component Summary, the Perceived Deficits Questionnaire, and the Mental Health Inventory. SF-36 scores for patients not converting to CDMS over 5 years were similar to those reported for age-matched normal controls. No other demographic or disease-related factors were associated with these PROs. When stratified by Expanded Disability Status Scale score, patients who converted to CDMS demonstrated statistically significant differences on the same four scales defined above that differentiated those who did and did not convert to CDMS. These data show that individuals who have CDMS but limited disability demonstrate clear evidence of diminished health-related quality of life.


2011 ◽  
Vol 17 (10) ◽  
pp. 1238-1249 ◽  
Author(s):  
Oscar Fernández ◽  
Karine Baumstarck-Barrau ◽  
Marie-Claude Simeoni ◽  
Pascal Auquier ◽  

Background: Multiple sclerosis (MS) can have psychological and socioeconomic consequences that affect patients’ health-related quality of life (HRQoL) as much as physical disability. Objective: To determine the clinical and sociodemographic factors affecting HRQoL in a large international study using the MS International QoL (MusiQoL) questionnaire. Methods: Patients aged >18 years with a diagnosis of MS for >6 months or clinically isolated syndrome (CIS) were enrolled. Sociodemographic and clinical data were recorded, and patients completed the MusiQoL and 36-item short form (SF-36) health survey questionnaires. Results: In total, 1992 patients from 15 countries were enrolled (mean [standard deviation] age: 42.3 [12.5] years; 70.5% women; 70.4% with relapsing–remitting MS). Multivariate multiple regression analyses identified lower educational level, higher Expanded Disability Status Scale (EDSS) score, cognitive impairment, being single and shorter time since last relapse as significant predictors of lower MusiQoL global index scores ( p < 0.05). Older age, female sex, higher EDSS score, shorter time since last relapse and receiving current MS treatment were significant predictors of lower SF-36 physical component summary scores ( p < 0.05). The SF-36 mental component summary score was linked to occupational status, inpatient/outpatient status, time since last relapse, and whether the patient was receiving MS treatment ( p < 0.05). Conclusion: Sociodemographic and clinical factors are linked to HRQoL in patients with MS. Interventions that affect these factors might be expected to influence HRQoL.


2001 ◽  
Vol 7 (4) ◽  
pp. 231-235 ◽  
Author(s):  
M W Nortvedt ◽  
T Riise ◽  
K-M Myhr ◽  
A-M Landtblom ◽  
A Bakke ◽  
...  

Objective: Physical disability explains only part of the reduced quality of life found among multiple sclerosis (MS) patients. Bladder dysfunction and sexual disturbance are frequent and distressing problems for MS patients. We therefore estimated the relationship between the presence and degree of sexual disturbance/bladder dysfunction and the patients' quality of life as measured by the SF-36 Health Survey. Methods: We performed a cross-sectional study of all individuals with the onset of MS between 1976 and 1986 in Hordaland County, Norway. The disease duration at examination was 9-19 years; 194 patients (94%) participated. Results: Fifty-three per cent of the patients with low physical disability (Expanded Disability Status Scale (EDSS)≤44.0) reported disease-related sexual disturbance and 44% had bladder dysfunction according to the Incapacity Status Scale. The corresponding figures for the patients with a high physical disability (EDSS>44.0) were 86 and 81% respectively. The patients with sexual disturbance had markedly and significantly reduced scores on all eight SF-36 scales, this was after adjustment for disease development measured by the EDSS. The patients without sexual disturbance scored 0.5 s.d. lower than a normal population on the social functioning scale, whereas those with marked sexual disturbance scored 1.5 s.d. lower. Similar results were found for the patients with bladder dysfunction. Conclusion: Bladder and sexual problems are associated with a marked reduction in the quality of life, also among patients with otherwise low disability. This underlines the need for identifying and treating these problems.


2007 ◽  
Vol 14 (2) ◽  
pp. 219-230 ◽  
Author(s):  
MC Simeoni ◽  
P. Auquier ◽  
O. Fernandez ◽  
P. Flachenecker ◽  
S. Stecchi ◽  
...  

This study aims to validate the Multiple Sclerosis (MS) International Quality of Life (MusiQoL) questionnaire, a multi-dimensional, self-administered questionnaire, available in 14 languages, as a disease-specific quality of life scale that can be applied internationally. A total of 1992 patients with different types and severities of MS from 15 countries were recruited. At baseline and day 21 ± 7, each patient completed the MusiQoL, a symptom checklist and the short-form (SF)-36 QoL questionnaire. Neurologists also collected socio-demographic, MS history and outcome data. The database was randomly divided into two subgroups and analysed according to different patient characteristics. For each model, psychometric properties were tested and the number of items was reduced by various statistical methods. Construct validity, internal consistency, reproducibility and external consistency were also tested. Nine dimensions, explaining 71% of the total variance, were isolated. Internal consistency and reproducibility were satisfactory for all the dimensions. External validity testing revealed that dimension scores correlated significantly with all SF-36 scores, but showed discriminant validity by gender, socio-economic and health status. Significant correlations were found between activity in daily life scores and clinical indices. These results demonstrate the validity and reliability of the MusiQoL as an international scale to evaluate QoL in patients with MS. Multiple Sclerosis 2008; 14: 219—230. http://msj.sagepub.com


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