Development and validation of a patient self-assessed questionnaire on satisfaction with communication of the multiple sclerosis diagnosis

2010 ◽  
Vol 16 (10) ◽  
pp. 1237-1247 ◽  
Author(s):  
A. Solari ◽  
K. Mattarozzi ◽  
L. Vignatelli ◽  
A. Giordano ◽  
PM Russo ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Intraclass Correlation ◽  
Newly Diagnosed ◽  
Care Indicator ◽  
Sclerosi Multipla ◽  
Multiple Sclerosis Patients ◽  
Test Retest Reliability ◽  
Development And Validation ◽  
Multiple Sclerosis Diagnosis

Background: We describe the development and clinical validation of a patient self-administered tool assessing the quality of multiple sclerosis diagnosis disclosure. Method: A multiple sclerosis expert panel generated questionnaire items from the Doctor’s Interpersonal Skills Questionnaire, literature review, and interviews with neurology inpatients. The resulting 19-item Comunicazione medico-paziente nella Sclerosi Multipla (COSM) was pilot tested/debriefed on seven patients with multiple sclerosis and administered to 80 patients newly diagnosed with multiple sclerosis. The resulting revised 20-item version (COSM-R) was debriefed on five patients with multiple sclerosis, field tested/debriefed on multiple sclerosis patients, and field tested on 105 patients newly diagnosed with multiple sclerosis participating in a clinical trial on an information aid. The hypothesized monofactorial structure of COSM-R section 2 was tested on the latter two groups. Results: The questionnaire was well accepted. Scaling assumptions were satisfactory in terms of score distributions, item—total correlations and internal consistency. Factor analysis confirmed section 2’s monofactorial structure, which was also test—retest reliable (intraclass correlation coefficient [ICC] 0.73; 95% CI 0.54—0.85). Section 1 had only fair test—retest reliability (ICC 0.45; 95% CI 0.12—0.69), and three items had 8—21% missed responses. Conclusions: COSM-R is a brief, easy-to-interpret MS-specific questionnaire for use as a health care indicator.

scholarly journals The timed 25-foot walk in a large cohort of multiple sclerosis patients

2021 ◽  
pp. 135245852110170
Author(s):  
Anissa Kalinowski ◽  
Gary Cutter ◽  
Nina Bozinov ◽  
Jessica A Hinman ◽  
Michael Hittle ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Predictive Validity ◽  
Intraclass Correlation ◽  
Correlation Coefficients ◽  
Control Analysis ◽  
Intraclass Correlation Coefficients ◽  
Multiple Sclerosis Patients ◽  
Case Control Analysis ◽  
Test Retest Reliability ◽  
Nested Case Control

Background: The timed 25-foot walk (T25FW) is a key clinical outcome measure in multiple sclerosis patient management and clinical research. Objectives: To evaluate T25FW performance and factors associated with its change in the Multiple Sclerosis Outcome Assessments Consortium (MSOAC) Placebo Database ( n = 2465). Methods: We created confirmed disability progression (CDP) variables for T25FW and Expanded Disability Status Scale (EDSS) outcomes. We used intraclass correlation coefficients (ICCs) and Bland Altman plots to evaluate reliability. We evaluated T25FW changes and predictive validity using a mixed-effects model, survival analysis, and nested case–control analysis. Results: The mean baseline score for the T25FW in this study population was 9.2 seconds, median = 6.1 (standard deviation = 11.0, interquartile range (IQR) = 4.8, 9.0). The T25FW measure demonstrated excellent test–retest reliability (ICC = 0.98). Walk times increased with age, disability, disease type, and disease duration; relapses were not associated with an increase. Patients with T25FW progression had a faster time to EDSS-CDP compared to those without (hazards ratio (HR): 2.6; confidence interval (CI): 2.2, 3.1). Changes in the T25FW were more likely to precede changes in EDSS. Conclusion: This research confirms the association of the T25FW with disability and provides some evidence of predictive validity. Our findings support the continued use of the T25FW in clinical practice and clinical trials.

Prevalence, co-occurrence, and trajectories of pain, fatigue, depression, and anxiety in the year following multiple sclerosis diagnosis

2021 ◽  
pp. 135245852110233
Author(s):  
Thomas R Valentine ◽  
Kevin N Alschuler ◽  
Dawn M Ehde ◽  
Anna L Kratz
Keyword(s):  
Multiple Sclerosis ◽  
Self Report ◽  
Depression And Anxiety ◽  
Newly Diagnosed ◽  
Individual Level ◽  
Stability Change ◽  
Clinically Significant ◽  
The Individual ◽  
Multiple Sclerosis Diagnosis

Background: Pain, fatigue, depression, and anxiety are common in multiple sclerosis, but little is known about the presence, co-occurrence, and trajectories of these symptoms in the year after multiple sclerosis (MS) diagnosis. Objectives: To determine, during the postdiagnosis year: (1) rates of pain, fatigue, depression, and anxiety; (2) rates of symptom co-occurrence; and (3) stability/change in symptom severity. Methods: Newly diagnosed adults with MS/clinically isolated syndrome ( N = 230) completed self-report measures of pain, fatigue, depression, and anxiety at 1, 2, 3, 6, 9, and 12 months after MS diagnosis. Clinical significance was defined based on standardized cutoffs. Descriptive statistics and Sankey diagrams characterized rates and trajectories. Results: Participants endorsed clinically significant symptoms at some point in the postdiagnosis year at rates of 50.9% for pain, 62.6% for fatigue, 47.4% for depression, and 38.7% for anxiety. A majority of patients exhibited co-occurring symptoms—21.3% with two, 19.1% with three, and 17.4% with four. The proportions of patients with clinically significant symptoms were generally stable over time; however, rates of symptom development/recovery revealed fluctuations at the individual level. Conclusions: Pain, fatigue, depression, and anxiety are prevalent in newly diagnosed MS. Prompt screening and evidence-based interventions are necessary if quality of life is to be optimized.

Test–Retest Reliability of the Mini-BESTest in People With Mild to Moderate Multiple Sclerosis

2021 ◽  
Author(s):  
A Wallin ◽  
M Kierkegaard ◽  
E Franzén ◽  
S Johansson
Keyword(s):  
Multiple Sclerosis ◽  
Measurement Errors ◽  
Balance Control ◽  
Intraclass Correlation ◽  
Repeated Measurements ◽  
Minimal Detectable Change ◽  
Detectable Change ◽  
Limits Of Agreement ◽  
Retest Reliability ◽  
Test Retest Reliability

Abstract Objective The mini-BESTest is a balance measure for assessment of the underlying physiological systems for balance control in adults. Evaluations of test–retest reliability of the mini-BESTest in larger samples of people with multiple sclerosis (MS) are lacking. The purpose of this study was to investigate test–retest reliability of the mini-BESTest total and section sum scores and individual items in people with mild to moderate overall MS disability. Methods This study used a test–retest design in a movement laboratory setting. Fifty-four people with mild to moderate overall MS disability according to the Expanded Disability Status scale (EDSS) were included, with 28 in the mild subgroup (EDSS 2.0–3.5) and 26 in the moderate subgroup (EDSS 4.0–5.5). Test–retest reliability of the mini-BESTest was evaluated by repeated measurements taken 1 week apart. Reliability and measurement error were analyzed. Results Test–retest reliability for the total scores were considered good to excellent, with intraclass correlation coefficients of .88 for the whole sample, .83 for the mild MS subgroup, and .80 for the moderate MS subgroup. Measurement errors were small, with standard error of measurement and minimal detectable change of 1.3 and 3.5, respectively, in mild MS, and 1.7 and 4.7, respectively, in moderate MS. The limits of agreement were − 3.4 and 4.6. Test–retest reliability for the section scores were fair to good or excellent; weighted kappa values ranged from .62 to .83. All items but 1 showed fair to good or excellent test–retest reliability, and percentage agreement ranged from 61% to 100%. Conclusions The mini-BESTest demonstrated good to excellent test–retest reliability and small measurement errors and is recommended for use in people with mild to moderate MS. Impact Knowledge of limits of agreement and minimal detectable change contribute to interpretability of the mini-BESTest total score. The findings of this study enhance the clinical usefulness of the test for evaluation of balance control and for designing individually customized balance training with high precision and accuracy in people with MS.

Quality of life in multiple sclerosis patients in Spain

2002 ◽  
Vol 8 (6) ◽  
pp. 527-531 ◽  
Author(s):  
C-H Chang ◽  
D Cella ◽  
O Fernández ◽  
G Luque ◽  
P de Castro ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Well Being ◽  
Cross Sectional Study ◽  
Self Report ◽  
Regression Analyses ◽  
Cross Sectional ◽  
Scale Scores ◽  
Multiple Sclerosis Patients

Objective: The cross-sectional study evaluated the psychometric properties of the Functional Assessment of Multiple Sclerosis (FAMS) Spanish version and its use in measuring quality of life (QOL) of multiple sclerosis (MS) patients in Spain. Methods: The FAMS is a factorially derived self-report scale designed to assess six primary aspects of QOL of patients with MS: Mobility, Symptoms, Emotional Well-Being, General Contentment, Thinking and Fatigue, and Family/Social Well-Being. Its Spanish translated version was used to assess QOL of 625 MS patients recruited in an outpatient clinic setting from 58 hospitals in Spain. Internal consistency of the Spanish FAMS was evaluated. Multiple regression analyses were performed to identify significant predictors from demographic, clinical and treatment characteristics, and Kurtzke Expanded Disability Status Scale (EDSS) scores in predicting FAMS scale scores. Results: Most of the patients are females (66%), and 74% were of the relapsing-remitting (RR) clinical subtype. Cronbach’s alpha coefficients were high (range=0.78-0.96), indicating subscale homogeneity comparable to that of the original English version. Linear multivariate regression analyses revealed that the EDSS is a dominant variable in predicting all the FAMS subscales, especially mobility (R2=0.51) and the total scores. Conclusions: The Spanish FAMS is a psychometrically valid instrument that allows clinicians and clinical researchers the ability to measure the QOL concerns of MS patients in Spain.

Quality of life in individuals newly diagnosed with multiple sclerosis or clinically isolated syndrome

2021 ◽  
Author(s):  
Kevin N. Alschuler ◽  
Daniel Whibley ◽  
Anna L. Kratz ◽  
Mark P. Jensen ◽  
Annette Wundes ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Clinically Isolated Syndrome ◽  
Newly Diagnosed

Fatigue, mood and quality of life improve in MS patients after progressive resistance training

2010 ◽  
Vol 16 (4) ◽  
pp. 480-490 ◽  
Author(s):  
U. Dalgas ◽  
E. Stenager ◽  
J. Jakobsen ◽  
T. Petersen ◽  
HJ Hansen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Resistance Training ◽  
Beneficial Effect ◽  
Control Group ◽  
Progressive Resistance Training ◽  
Multiple Sclerosis Patients ◽  
Progressive Resistance

Fatigue occurs in the majority of multiple sclerosis patients and therapeutic possibilities are few. Fatigue, mood and quality of life were studied in patients with multiple sclerosis following progressive resistance training leading to improvement of muscular strength and functional capacity. Fatigue (Fatigue Severity Scale, FSS), mood (Major Depression Inventory, MDI) and quality of life (physical and mental component scores, PCS and MCS, of SF36) were scored at start, end and follow-up of a randomized controlled clinical trial of 12 weeks of progressive resistance training in moderately disabled (Expanded Disability Status Scale, EDSS: 3—5.5) multiple sclerosis patients including a Control group ( n = 15) and an Exercise group ( n = 16). Fatigue (FSS > 4) was present in all patients. Scores of FSS, MDI, PCS—SF36 and MCS—SF36 were comparable at start of study in the two groups. Fatigue improved during exercise by —0.6 (95% confidence interval (CI) —1.4 to 0.4) a.u. vs. 0.1 (95% CI —0.4 to 0.6) a.u. in controls ( p = 0.04), mood improved by —2.4 (95% CI —4.1 to 0.7) a.u. vs. 1.1 (—1.2 to 3.4) a.u. in controls ( p = 0.01) and quality of life (PCS—SF36) improved by 3.5 (95% CI 1.4—5.7) a.u. vs. —1.0 (95% CI —3.4—1.4) a.u. in controls ( p = 0.01). The beneficial effect of progressive resistance training on all scores was maintained at follow-up after further 12 weeks. Fatigue, mood and quality of life all improved following progressive resistance training, the beneficial effect being maintained for at least 12 weeks after end of intervention.

scholarly journals Symbol Digit Modalities Test Variant in a Smartphone App for Persons With Multiple Sclerosis: Validation Study (Preprint)

2020 ◽  
Author(s):  
Pim van Oirschot ◽  
Marco Heerings ◽  
Karine Wendrich ◽  
Bram den Teuling ◽  
Marijn B Martens ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Construct Validity ◽  
Validation Study ◽  
Intraclass Correlation ◽  
Study Participant ◽  
Smartphone App ◽  
Retest Reliability ◽  
Matched Group ◽  
Test Retest Reliability ◽  
Study Participants

BACKGROUND The decline of cognitive processing speed (CPS) is a common dysfunction in persons with multiple sclerosis (MS). The Symbol Digit Modalities Test (SDMT) is widely used to formally quantify CPS. We implemented a variant of the SDMT in MS sherpa, a smartphone app for persons with MS. OBJECTIVE The aim of this study was to investigate the construct validity and test-retest reliability of the MS sherpa smartphone variant of the SDMT (sSDMT). METHODS We performed a validation study with 25 persons with relapsing-remitting MS and 79 healthy control (HC) subjects. In the HC group, 21 subjects were matched to the persons with MS with regard to age, gender, and education and they followed the same assessment schedule as the persons with MS (the “HC matched” group) and 58 subjects had a less intense assessment schedule to determine reference values (the “HC normative” group). Intraclass correlation coefficients (ICCs) were determined between the paper-and-pencil SDMT and its smartphone variant (sSDMT) on 2 occasions, 4 weeks apart. Other ICCs were determined for test-retest reliability, which were derived from 10 smartphone tests per study participant, with 3 days in between each test. Seven study participants with MS were interviewed regarding their experiences with the sSDMT. RESULTS The SDMT scores were on average 12.06% higher than the sSDMT scores, with a standard deviation of 10.68%. An ICC of 0.838 was found for the construct validity of the sSDMT in the combined analysis of persons with MS and HC subjects. Average ICCs for test-retest reliability of the sSDMT for persons with MS, the HC matched group, and the HC normative group were 0.874, 0.857, and 0.867, respectively. The practice effect was significant between the first and the second test of the persons with MS and the HC matched group and trivial for all other test-retests. The interviewed study participants expressed a positive attitude toward the sSDMT, but they also discussed the importance of adapting a smartphone cognition test in accordance with the needs of the individual persons with MS. CONCLUSIONS The high correlation between sSDMT and the conventional SDMT scores indicates a very good construct validity. Similarly, high correlations underpin a very good test-retest reliability of the sSDMT. We conclude that the sSDMT has the potential to be used as a tool to monitor CPS in persons with MS, both in clinical studies and in clinical practice.

Memory performance in multiple sclerosis patients correlates with central brain atrophy

2006 ◽  
Vol 12 (4) ◽  
pp. 428-436 ◽  
Author(s):  
H Hildebrandt ◽  
H K Hahn ◽  
J A Kraus ◽  
A Schulte-Herbrüggen ◽  
B Schwarze ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Brain Atrophy ◽  
Motor Performance ◽  
Memory Performance ◽  
Cognitive Tests ◽  
Duration Of Symptoms ◽  
Central Brain ◽  
Multiple Sclerosis Patients

Objective To assess whole brain and central brain atrophy as well as their differential relation to memory, cognitive performance, fatigue, depression and quality of life in patients with relapsingremitting multiple sclerosis (RRMS). Methods A 3D flow compensated gradient recalled T1-weighted MRI was acquired in 45 RRMS patients. An automated analysis tool was used to calculate brain parenchymal fraction (BPF) and ventricular brain fraction (VF). All patients were assessed with neuropsychological tests focusing on memory and self-rating scales for depression, fatigue and quality of life. Age corrected partial correlations between brain atrophy, motor performance, psychological scales and test scores were calculated. Results BPF correlated moderately (0.35≤r<0.5) with duration of symptoms and disease, the Expanded Disability Status Scale (EDSS), the upper extremity motor performance, and with mental aspects of quality of life. VF correlated moderately with EDSS, upper and lower extremity motor performance and memory functions. Neither BPF nor VF correlated with fatigue and depression. Results of several cognitive tests correlated moderately with depression and fatigue, the Paced Auditory Serial Addition Test (PASAT) showing the largest correlation. Conclusions Memory performance shows a correlation with relative ventricular size in RRMS patients, indicating the strategic location of the ventricle system along the structures of the limbic system and its vulnerability in MS. The PASAT and several other cognitive tests show moderate correlations with depression and fatigue, arguing for an inter relation between the cognitive functioning and the emotional state of patients. However, this relation is independent of measurable brain atrophy.

scholarly journals Validity and Reliability of Brief International Cognitive Assessment for Multiple Sclerosis (BICAMS) in Indonesia and the Correlation with Quality of Life

2019 ◽  
Vol 2019 ◽  
pp. 1-7
Author(s):  
Riwanti Estiasari ◽  
Yuhyi Fajrina ◽  
Diatri Nari Lastri ◽  
Syarli Melani ◽  
Kartika Maharani ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Cognitive Impairment ◽  
Cognitive Function ◽  
Cognitive Assessment ◽  
Verbal Learning ◽  
Retest Reliability ◽  
Cognitive Evaluation ◽  
Test Retest Reliability

Introduction. Multiple Sclerosis (MS) can affect cognitive function that might interfere with quality of life. Processing speed and memory are the most common area of cognitive impairment. Cognitive evaluation in daily practice is often difficult to be performed since it needs neuropsychological expert and is time-consuming. Brief International Cognitive Assessment for MS (BICAMS) is valid and practical for cognitive evaluation. This study aims to validate BICAMS in Indonesian MS patients and healthy controls (HC) and to analyse the effect of cognitive impairment on quality of life. Methods. BICAMS, which composes Symbol Digits Modalities Test (SDMT), California Verbal Learning Test-Second Edition (CVLT-II), and Brief Visuospatial Memory Test-Revised (BVMT-R), was translated and cross-culturally adapted to Indonesian from the original BICAMS and then administered to 40 Indonesian MS patients and 66 HC matched by sex, age, and education. Test-retest reliability was performed on 16-MS patients and 42 HC. Quality of life was measured using Multiple Sclerosis Quality of Life (MSQOL-54) instrument. Results. The SDMT, CVLT-II, and BVMT-R score in MS patients were significantly lower than those in HC (effect size, r: 0.61, 0.36, and 0.47, respectively). Test-retest reliability for all tests was satisfactory with correlation coefficient for SDMT, CVLT-II, and BVMT-R in MS subjects 0.86, 0.81, and 0.83, respectively. Using 5th percentile of HC score as cut-off, 15% MS subjects had impairment in one test, 27.5% in two tests, and 40% in three tests. BICAMS was moderately correlated with EDSS but was not correlated with disease duration and relapse rate. SDMT score correlated with physical function and physical and mental role limitation. Conclusion. BICAMS is valid and reliable for assessing cognitive function of Indonesia MS patients.

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