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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

Background The influence of personality on health-related quality of life in patients with multiple sclerosis has been the focus of previous studies showing that introversion and neuroticism were related with reduced health related quality of life. However, no data exist on the impact of temperament on quality of life in this patient group. Methods Between April 2014 and March 2016 139 multiple sclerosis patients were recruited from a specialized outpatient clinic of the general hospital of Vienna. Health-related quality of life was measured by “The Multiple Sclerosis International Quality of Life Questionnaire (MusiQol)”, temperament by “Temperament Evaluation of Memphis, Pisa, Paris, and San Diego Questionnaire – Münster version” (briefTEMPS-M), and disability by the “Expanded disability status scale”. All patients underwent a diagnostic psychiatric semi-structured interview (MINI). Results Known predictors (like disease duration, EDSS, psychiatric co-morbidities, immunomodulatory treatments) explain the proportion of variation in the outcome of MusiQol global index score in 30.9% in multi-variable linear regression analysis. It increased respectively to 40.3, 42.5, and 45.8% if adding the depressive, cyclothymic, or hyperthymic temperament to the list of variables. An increase of depressive and cyclothymic temperament scores significantly reduced global index score of MusiQol ( p  = 0.005, p  = 0.002, respectively), while the hyperthymic temperament significantly raised it ( p  < 0.001). Conclusion In MS patients, the depressive and cyclothymic temperament predict a lower and hyperthymic temperament an increased health-related quality of life, independent of current disability status, immunomodulatory treatments, and affective co-morbidities.

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.

BACKGROUND:To enhance the use of quality of life (QoL) measures in clinical practice, it is pertinent to help clinicians interpret QoL scores. OBJECTIVE:The aim of this study was to define clusters of QoL levels from a specific questionnaire (MusiQoL) for multiple sclerosis (MS) patients using a new method of interpretable clustering based on unsupervised binary trees and to test the validity regarding clinical and functional outcomes. METHODS:In this international, multicenter, cross-sectional study, patients with MS were classified using a hierarchical top-down method of Clustering using Unsupervised Binary Trees. The clustering tree was built using the 9 dimension scores of the MusiQoL in 2 stages, growing and tree reduction (pruning and joining). A 3-group structure was considered, as follows“high,” “moderate,” and “low” QoL levels. Clinical and QoL data were compared between the 3 clusters. RESULTS:A total of 1361 patients were analyzed87 were classified with “low,” 1173 with “moderate,” and 101 with “high” QoL levels. The clustering showed satisfactory properties, including repeatability (using bootstrap) and discriminancy (using factor analysis). The 3 clusters consistently differentiated patients based on sociodemographic and clinical characteristics, and the QoL scores were assessed using a generic questionnaire, ensuring the clinical validity of the clustering. CONCLUSIONS:The study suggests that Clustering using Unsupervised Binary Trees is an original, innovative, and relevant classification method to define clusters of QoL levels in MS patients.

Objective Quality of life (QoL) measurements are considered important outcome measures both for research on multiple sclerosis (MS) and in clinical practice. Computerized adaptive testing (CAT) can improve the precision of measurements made using QoL instruments while reducing the burden of testing on patients. Moreover, a cross-cultural approach is also necessary to guarantee the wide applicability of CAT. The aim of this preliminary study was to develop a calibrated item bank that is available in multiple languages and measures QoL related to mental health by combining one generic (SF-36) and one diseasespecific questionnaire (MusiQoL). Methods Patients with MS were enrolled in this international, multicenter, cross-sectional study. The psychometric properties of the item bank were based on classical test and item response theories and approaches, including the evaluation of unidimensionality, item response theory model fitting, and analyses of differential item functioning (DIF). Convergent and discriminant validities of the item bank were examined according to socio-demographic, clinical, and QoL features. Results A total of 1992 patients with MS and from 15 countries were enrolled in this study to calibrate the 22-item bank developed in this study. The strict monotonicity of the Cronbach's alpha curve, the high eigenvalue ratio estimator (5.50), and the adequate CFA model fit (RMSEA = 0.07 and CFI = 0.95) indicated that a strong assumption of unidimensionality was warranted. The infit mean square statistic ranged from 0.76 to 1.27, indicating a satisfactory item fit. DIF analyses revealed no item biases across geographical areas, confirming the cross-cultural equivalence of the item bank. External validity testing revealed that the item bank scores correlated significantly with QoL scores but also showed discriminant validity for socio-demographic and clinical characteristics. Conclusion This work demonstrated satisfactory psychometric characteristics for a QoL item bank for MS in multiple languages. This work may offer a common measure for the assessment of QoL in different cultural contexts and for international studies conducted on MS.

Background Multiple sclerosis (MS), a common neurodegenerative disease, has well-described associations with quality of life (QoL) impairment. QoL changes found in longitudinal studies are difficult to interpret due to the potential response shift (RS) corresponding to respondents’ changing standards, values, and conceptualization of QoL. This study proposes to test the capacity of Random Forest (RF) for detecting RS reprioritization as the relative importance of QoL domains’ changes over time. Methods This was a longitudinal observational study. The main inclusion criteria were patients 18 years old or more with relapsing-remitting multiple sclerosis. Every 6 months up to month 24, QoL was recorded using generic and MS-specific questionnaires (MusiQoL and SF-36). At 24 months, individuals were divided into two ‘disability change’ groups: worsened and not-worsened patients. The RF method was performed based on Breiman’s description. Analyses were performed to determine which QoL scores of SF-36 predicted the MusiQoL index. The average variable importance (AVI) was estimated. Results A total of 417 (79.6%) patients were defined as not-worsened and 107 (20.4%) as worsened. A clear RS was identified in worsened patients. While the mental score AVI was almost one third higher than the physical score AVI at 12 months, it was 1.5 times lower at 24 months. Conclusion This work confirms that the RF method offers a useful statistical approach for RS detection. How to integrate the RS in the interpretation of QoL scores remains a challenge for future research. Trial registration ClinicalTrials.gov identifier: NCT00702065

Background Responsiveness, defined as the ability to detect a meaningful change, is a core psychometric property of an instrument measuring quality of life (QoL) rarely reported in multiple sclerosis (MS) studies. Objective To assess the responsiveness of the Multiple Sclerosis International Quality of Life (MusiQoL) questionnaire to change in disability over 24 months, defined by change in the Expanded Disability Status Scale (EDSS) score. Methods Patients with MS were enrolled into a multicenter, longitudinal observational study. QoL was assessed using both the MusiQoL and the 36-Item Short-Form (SF-36) instruments at baseline and every 6 months thereafter up to month 24; neurological assessments, including EDSS score, were performed at each evaluation. Results The 24-month EDSS was available for 524 patients. In the 107 worsened patients, two specific dimensions of MusiQoL, the sentimental and sexual life and the relationships with health care system dimensions, and ‘physical’ scores of SF-36 showed responsiveness. Conclusions Whereas specific dimensions of MusiQoL identified EDSS changes, the MusiQoL index did not detect disability changes in worsened MS patients in a 24-month observational study. Future responsiveness validation studies should include longer follow-up and more representative samples.

Background The extent to which MS patients with cognitive dysfunction can accurately self-report outcomes has been a crucial issue. The aim of this study was to quantify and compare the relevance of the quality of life (QoL) assessment between two populations with a high occurrence of cognitive dysfunction, specifically in individuals with multiple sclerosis (MS) and in individuals suffering from schizophrenia (SCZ). Methods Design: A cross-sectional study was performed using the following inclusion criteria: MS and SCZ patients were diagnosed according to the McDonald criteria and DSM-IV criteria, respectively. Data on sociodemographic (age, gender, education level) and clinical (disease severity, disease duration) factors, QoL (disease-specific questionnaires, MusiQoL and SQoL) and cognitive performance (executive, memory, and attention functions) were collected. Non-impaired and impaired populations were defined according to the French norms. Psychometric properties were compared to those reported in reference populations, which were assessed in the respective validation studies. Suitability indices were provided used to quantitatively compare how the structures in the different populations matched with the initial structure of the questionnaires (reference populations). Results One hundred and twenty-four MS patients and 113 SCZ patients were enrolled. Factor analysis was performed on the impaired populations and revealed that the questionnaire structure adequately matched the initial structure of the disease-specific QoL questionnaires. All of the suitability indices of construct and external validity in the non-impaired populations ranged from 70 to 100%. Conclusions Our study suggested that cognitive dysfunction did not compromise the reliability or validity of the self-reported QoL questionnaires among subjects with cognitive dysfunction, such as MS and SCZ. Thus, this report may clarify the relevance of using self-reported QoL assessments in clinical practice.

Background Attention disturbances are frequently observed in multiple sclerosis (MS) patients. The aim of this study was to provide new evidence regarding the suitability of using self-reported QoL information in this impaired population by exploring the construct validity, reliability, and external validity of a MS-specific quality of life (QoL) instrument. Methods Design: cross-sectional study. Inclusion criteria : MS patients of any disease subtype. Data collection : sociodemographic (age, gender, marital status, education level, and occupational activity) and clinical data (Expanded Disability Status Scale, disease duration); QoL (MusiQoL and SF36); and attention performance (Wechsler Memory Scale and PASAT). According to the French norms, non-impaired and impaired populations were defined. For each population, suitability indices were provided to quantify how the structures matched with the initial structure of the reference population assessed in the validation study. Findings One hundred and twenty-four consecutive patients were enrolled. The factor analysis performed in the impaired populations showed that the questionnaire structure adequately matched the initial structure of the MusiQoL. The unidimensionality of the dimensions was preserved, and the internal/external validity indices were close to those of the reference population. Conclusions Our study suggests that attention impairment dysfunction did not compromise the reliability and validity of the self-reported QoL questionnaires.

We present here the results of a multicenter study addressing quality of life (QoL) using the MusiQoL questionnaire in 534 patients with multiple sclerosis receiving glatiramer acetate (GA) at a dose of 20 mg/day s.c. for 12 months. These data were compared with results from multicenter observations using the same questionnaire in 1420 MS patients receiving s.c. β-interferon-1a at a dose of 44 μg three times a week for at least one year. QoL measures were found to depend on gender, age, and duration of MS. Statistically significant improvements in QoL were seen at 12 months of treatment on the background of courses of GA. Treatment with β-interferon-1a produced improvements by 6 months.