Validation of the NARCOMS Registry: fatigue assessment

2005 ◽  
Vol 11 (5) ◽  
pp. 583-584 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Gary Cutter ◽  
Tuula Tyry ◽  
Olympia Hadjimichael ◽  
Denise Campagnolo ◽  
...  

Participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry report disability using Performance Scales (PS), which assess eight domains. We aimed to validate the PS fatigue subscale (PSF) using the Fatigue Severity Scale (FSS) and the Modified Fatigue Impact Scale (MFIS) as external criteria. We measured correlations between the PSF and age, disease duration and PS subscales to assess construct validity. The PSF correlated strongly with the MFIS (r=0.72, p<0.0001) and FSS (r=0.75, p<0.0001). Correlations between the PSF and age, disease duration were low, indicating divergent validity. Correlations between the PSF and spasticity, sensory and mobility PS scales were moderate, indicating convergent validity. The PSF has adequate criterion and construct validity in MS.

2008 ◽  
Vol 10 (3) ◽  
pp. 81-84 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Gary Cutter ◽  
Tuula Tyry ◽  
Denise Campagnolo ◽  
Timothy Vollmer

Participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) registry report depression with one question. We aimed to validate the NARCOMS depression scale against the Center for Epidemiologic Studies Depression Scale (CESD) and self-reported diagnoses of depression. The NARCOMS scale correlated with the CESD (r = 0.73; 95% confidence interval 0.72–0.74), and a score ≥2 had a sensitivity of 87% and specificity of 92% for depression. Correlations between the NARCOMS scale and age and body mass index were low, indicating divergent validity, whereas correlations with pain and fatigue were moderate, indicating convergent validity. The NARCOMS depression scale has adequate criterion and construct validity in MS.


2005 ◽  
Vol 11 (3) ◽  
pp. 338-342 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Gary Cutter ◽  
Tuula Tyry ◽  
Olympia Hadjimichael ◽  
Timothy Vollmer

The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry is a multiple sclerosis (MS) self-report registry with more than 24 000 participants. Participants report disability status upon enrolment, and semi-annually using Performance Scales (PS), Patient Determined Disease Steps (PDDS) and a pain question. In November 2000 and 2001, we also collected the Pain Effects Scale (PES). Our aim was to validate the NARCOMS pain question using the PES as our criterion measure. We measured correlations between the pain question and age, disease duration, various PS subscales and PDDS to assess construct validity. We correlated pain question responses in participants who reported no change in PDSS or the PS subscales between questionnaires to determine test—retest reliability. We measured responsiveness in participants who reported a substantial change in the sensory, spasticity PS subscales. The correlation between the pain question and PES was r=0.61 in November 2000, and r=0.64 in November 2001 (both P<0.0001). Correlations between the pain question and age, and disease duration were low, indicating divergent validity. Correlations between the pain question and spasticity, sensory PS subscales and PDSS were moderate, indicating convergent validity. Test—retest reliability was r=0.84 (P<0.0001). Responsiveness was 70.7%. The pain question is a valid self-report measure of pain in MS.


2002 ◽  
Vol 8 (6) ◽  
pp. 523-526 ◽  
Author(s):  
P Flachenecker ◽  
T Kümpfel ◽  
B Kallmann ◽  
M Gottschalk ◽  
O Grauer ◽  
...  

Objectives: Fatigue is one of the most common, yet poorly defined, disabling symptoms in patients with multiple sclerosis (MS). To delineate more clearly the frequency and type of fatigue, we first compared four widely used fatigue scales in consecutive MS patients. Secondly, to further clarify the nature of fatigue, we investigated its relation to physical disability, course of the disease, immunotherapy, and depression. Patients and Methods: Between February and September 2000, 151 consecutive MS patients entering our outpatient clinic (94 relapsing-remitting, 50 secondary progressive, and 7 primary progressive patients; mean age 29.0-7.3 years, mean disease duration 9.9-6.7 years, median EDSS 3.5) filled in a standardized questionnaire including four fatigue scales - Fatigue Severity Scale (FSS), MS-specific FSS (MFSS), Modified Fatigue Impact Scale (MFIS), and Visual Analogue Scale (VAS). Patients were included in the ‘MS-related fatigue group’ (MS-F) when they stated in the questionnaire that fatigue: 1) is one of their three most disabling symptoms; 2) occurs daily or on most of the days; and 3) limits their activities at home or at work. Patients fulfilling none of these criteria were classified as ‘MS-related nonfatigue group’ (MS-NF). Depression was measured by Beck’s Depression Inventory (BDI). Results: Although all scales showed significant differences between MS-F and MS-NF, correlation between these scales was, at best, moderate (correlation coefficients ranging from 0.06 to 0.56). The most discriminative scales were FSS and MFIS, showing no overlap of the 10th and 90th percentiles for the MS-F and MS-NF groups, with cut-off values of 4.6 and 38, respectively. Depression (BDI≥18) was present in 24 of 148 patients who filled in the BDI (16%). FSS was significantly correlated with physical disability (r =0.33, p <0.0001) and BDI (r =0.41, p<0.0001), but not with age, disease duration, clinical activity, and treatment with interferon-b. In multivariate analysis, however, only BDI independently predicted fatigue. Conclusions: The association of fatigue and depression suggests that there might be either common underlying mechanisms or interdependence by a cause-and-effect relationship that requires further investigation. The weak correlation within various fatigue scales is best explained by the fact that fatigue is a multidimensional symptom and, therefore, the available tests measure and weight different aspects of fatigue. Our findings underline the necessity for a more exact definition of fatigue and the development of more valid tools if these are to be used to evaluate treatments.


2013 ◽  
Vol 331 (1-2) ◽  
pp. 102-107 ◽  
Author(s):  
Y.C. Learmonth ◽  
D. Dlugonski ◽  
L.A. Pilutti ◽  
B.M. Sandroff ◽  
R. Klaren ◽  
...  

2005 ◽  
Vol 11 (1) ◽  
pp. 76-80 ◽  
Author(s):  
D Kos ◽  
E Kerckhofs ◽  
I Carrea ◽  
R Verza ◽  
M Ramos ◽  
...  

Objective: To evaluate the psychometric properties of the Modified Fatigue Impact Scale (MFIS) in four different European countries. Methods: Individuals with definite multiple sclerosis (MS) were selected from centres in Italy (n=50), Spain (n=30), Slovenia (n=50) and Belgium (n=51) and completed the MFIS and the Fatigue Severity Scale (FSS) twice (interval ≤ 3 days). Results: In all four samples, the MFIS demonstrated a good reproducibility (intraclass correlation coefficient ≥ 0.84), with no significant differences between countries (P=0.77). Moderate correlations were found between the MFIS and FSS. No significant correlations were found between the MFIS and age, gender, type of MS, duration of the disease or EDSS score. Factor analysis of all samples (n=181) could not completely confirm the original assumptions concerning the physical, cognitive and psychosocial component. The total score, the physical and the cognitive subscale of the scale were homogeneous (Cronbach’s alpha 0.92, 0.88 and 0.92, respectively), but the psychosocial subscale had a Cronbach’s alpha of 0.65. Conclusions: No cultural or linguistic differences were found in the psychometric properties of the Belgian, Italian, Slovenian or Spanish version of the MFIS. We recommend this scale for research purposes and in clinical practice. Due to the limited value of the psychosocial subscale, we recommend interpreting this subscale with caution.


2008 ◽  
Vol 14 (4) ◽  
pp. 500-505 ◽  
Author(s):  
C. Sauter ◽  
K. Zebenholzer ◽  
J. Hisakawa ◽  
J. Zeitlhofer ◽  
K. Vass

Objective Fatigue management and energy conservation are effective strategies to minimize fatigue in multiple sclerosis (MS). Sustained results have not yet been reported. Methods A fatigue management course was provided for 32 MS patients. They were tested prior to, directly after participation in the course and in a 7—9 month follow-up with the Fatigue Severity Scale, the MS-specific Fatigue Scale, the Modified Fatigue Impact Scale (MFIS), the Pittsburgh Sleep Quality Index and a self-rating scale for depression. The Expanded Disability Status Score (EDSS) and the MS functional composite (MSFC) were evaluated before and after participation in the course. Results The total score and the Cognitive and Physical subscores of the MFIS showed significant improvements on both points of time. Scores in the Fatigue Severity Scale, MS-specific Fatigue Scale and Psychosocial Fatigue Impact Scale did not improve significantly. MS functional composite and EDSS remained unchanged after six weeks of course participation. Subjective sleep quality improved directly after participation in the course and after 7—9 months. The depression score decreased significantly to a normal level at the end of training and in the 7—9 month follow-up. Conclusion Fatigue management enables MS patients to cope with their fatigue and energy more effectively. Follow-up evaluations showed stable results after 7—9 months. Multiple Sclerosis 2008; 14: 500—505. http://msj.sagepub.com


2017 ◽  
Vol 19 (5) ◽  
pp. 240-246 ◽  
Author(s):  
Ahmad Fallata ◽  
Amber Salter ◽  
Tuula Tyry ◽  
Gary R. Cutter ◽  
Ruth Ann Marrie

Background: Trigeminal neuralgia (TN) is a well-recognized cause of facial pain in the general population, and multiple sclerosis (MS) accounts for some of these cases. However, the prevalence of TN in MS is poorly understood. We investigated the prevalence of TN and how often TN is the initial presentation of MS in a large MS cohort. Methods: In 2009, we surveyed participants in the North America Research Committee on Multiple Sclerosis Registry regarding TN, including date of onset and pharmacologic and nonpharmacologic treatments used. We estimated the frequency of TN and the frequency with which TN preceded the diagnosis of MS. We compared the demographic and clinical characteristics of participants who reported TN with those of participants who did not using descriptive statistics and logistic regression. Results: Among 8590 eligible survey respondents, the prevalence of TN was 830 (9.7%). Of these respondents, 588 reported the year when TN was diagnosed. The diagnosis of TN preceded that of MS in 88 respondents (15.0%), and the mean ± SD age at diagnosis of TN was 45.3 ± 11.0 years. The odds of reporting TN were higher in women and those with greater disability and longer disease duration. Pharmacologic treatments were used by 88.3% of respondents; 9.7% underwent surgical interventions. Conclusions: In MS, TN occurs frequently and precedes the diagnosis of MS in 15.0% of individuals. Given the frequency of TN in MS, further epidemiological studies and clinical trials to identify effective pharmacologic and nonpharmacologic therapies for TN in MS are warranted.


2011 ◽  
Vol 17 (12) ◽  
pp. 1464-1471 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Gary Cutter ◽  
Tuula Tyry

Background: Visual comorbidities are common in multiple sclerosis (MS) but the impact of visual comorbidities on visual disability is unknown. Objective: We assessed the impact of visual and vascular comorbidities on severity of visual disability in MS. Methods: In 2006, we queried participants of the North American Research Committee on Multiple Sclerosis (NARCOMS) about cataracts, glaucoma, uveitis, hypertension, hypercholesterolemia, heart disease, diabetes and peripheral vascular disease. We assessed visual disability using the Vision subscale of Performance Scales. Using Cox regression, we investigated whether visual or vascular comorbidities affected the time between MS symptom onset and the development of mild, moderate and severe visual disability. Results: Of 8983 respondents, 1415 (15.9%) reported a visual comorbidity while 4745 (52.8%) reported a vascular comorbidity. The median (interquartile range) visual score was 1 (0–2). In a multivariable Cox model the risk of mild visual disability was higher among participants with vascular (hazard ratio [HR] 1.45; 95% confidence interval [CI]: 1.39–1.51) and visual comorbidities (HR 1.47; 95% CI: 1.37–1.59). Vascular and visual comorbidities were similarly associated with increased risks of moderate and severe visual disability. Conclusions: Visual and vascular comorbidities are associated with progression of visual disability in MS. Clinicians hearing reports of worsening visual symptoms in MS patients should consider visual comorbidities as contributing factors. Further study of these issues using objective, systematic neuro-ophthalmologic evaluations is warranted.


2010 ◽  
Vol 16 (6) ◽  
pp. 724-732 ◽  
Author(s):  
CL Hugos ◽  
LF Copperman ◽  
BE Fuller ◽  
V. Yadav ◽  
J. Lovera ◽  
...  

Fatigue: Take Control is a novel program to teach fatigue management to people with multiple sclerosis (MS) following recommendations in the Fatigue and Multiple Sclerosis guideline. Fatigue: Take Control includes six 2-hour group sessions with DVD viewing, discussion and homework and accompanying participant and leader workbooks. While many people have participated in Fatigue: Take Control programs, its efficacy has not been determined. The objective of this study was to determine whether participation in Fatigue: Take Control reduces fatigue and increases self-efficacy in people with MS. Thirty participants were randomly assigned to a group who immediately participated in the program (FTC) or a wait-list group (WL). The primary outcome was the Modified Fatigue Impact Scale (MFIS) and secondary outcomes were the Multiple Sclerosis Self-Efficacy Scale (MSSE) and the Fatigue Severity Scale (FSS). The MFIS was administered on 10 occasions. Other measures were administered on four occasions. A mixed model tested the effects using all observations. Compared with the WL, the FTC group had significantly more improvement on the MFIS [F(1, 269) = 7.079, p = 0.008] and the MSSE [F(1, 111) = 5.636, p = 0.019]. No significant effect was found for the FSS. Across all visits, fatigue was significantly lower and self-efficacy was significantly higher for the FTC group compared with the WL group. This pilot study demonstrated significant effects in fatigue and self-efficacy among subjects taking the Fatigue: Take Control program, suggesting that this comprehensive program based on the Fatigue and Multiple Sclerosis guideline may be beneficial in MS.


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