The Multiple Sclerosis Self-Management Scale-2: Evaluation of an Updated Scale

2019 ◽  
Vol 50 (3) ◽  
pp. 210-226
Author(s):  
Malachy L. Bishop ◽  
Michael P. Frain ◽  
Jian Li ◽  
Chung-Yi Chiu ◽  
Bradley McDaniels ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Factor Analysis ◽  
Factor Structure ◽  
Self Management ◽  
Research Committee ◽  
The North ◽  
Management Interventions ◽  
National Multiple Sclerosis Society ◽  
The Stability ◽  
And Behavior

ObjectiveThe Multiple Sclerosis Self-Management Scale (MSSM) was developed to provide a multidimensional and psychometrically sound assessment of self-management knowledge and behavior among adults with multiple sclerosis (MS). The scale was recently updated with new items to address advances in MS treatment and self-management interventions. We present results of an evaluation of these updates and the psychometric adequacy of the updated MSSM.MethodParticipants were 2,393 adults with MS recruited through the North American Research Committee on Multiple Sclerosis (NARCOMS) registry and selected chapters of the National Multiple Sclerosis Society. Participants completed the MSSM and several additional instruments of function and quality of life. A seven-factor structure of the revised MSSM (MSSM-2) was identified using exploratory and confirmatory factor analysis and the stability of the factor structure was evaluated using a cross-validation approach.ResultsFactor analysis of the updated MSSM-2 revealed seven factors. Construct validity was supported by factor analysis and correlation of the MSSM with constructs related to self-management.ConclusionThe MSSM-2 provides a brief, psychometrically sound multidimensional assessment of MS self-management for research and clinical applications.

scholarly journals A survey of risk tolerance to multiple sclerosis therapies

Neurology ◽  
2019 ◽  
Vol 92 (14) ◽  
pp. e1634-e1642 ◽  
Author(s):  
Robert J. Fox ◽  
Carol Cosenza ◽  
Lauren Cripps ◽  
Paul Ford ◽  
MaryBeth Mercer ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Kidney Injury ◽  
Risk Tolerance ◽  
Research Committee ◽  
Risk Scenarios ◽  
The North ◽  
Disease Modifying Therapy ◽  
Multiple Risks ◽  
Wide Range ◽  
National Multiple Sclerosis Society

ObjectiveTo determine tolerance to various risk scenarios associated with current multiple sclerosis (MS) therapies.MethodsPeople with MS from the North American Research Committee on Multiple Sclerosis Registry's online cohort and the National Multiple Sclerosis Society were invited to complete a questionnaire on tolerance to real-world risks associated with a hypothetical therapy. Multiple risks levels were presented, including skin rash, infection, kidney injury, thyroid injury, liver injury, and progressive multifocal leukoencephalopathy (PML).ResultsBoth PML and kidney injury had the lowest risk tolerance (RT) at 1:1,000,000, and thyroid and infection risks had the highest tolerance at 1:1,000. Men, younger individuals, and participants with greater disability reported a higher tolerance to all risk scenarios. Those who were currently taking an MS therapy reported higher tolerance than those not taking any therapy. Participants taking infusion therapies reported high tolerance to all risks, and those taking injectables reported a lower tolerance.ConclusionPeople with MS displayed a wide range of RT for MS therapies. Our study identified sex, age, disability, and current disease-modifying therapy use to be associated with RT.

scholarly journals Disease-modifying therapy prescription patterns in people with multiple sclerosis by age

2021 ◽  
Vol 14 ◽  
pp. 175628642110064
Author(s):  
Yinan Zhang ◽  
Amber Salter ◽  
Shan Jin ◽  
William J. Culpepper ◽  
Gary R. Cutter ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Disease Activity ◽  
Age Groups ◽  
The Elderly ◽  
Department Of Veterans Affairs ◽  
Real World Data ◽  
Research Committee ◽  
The North ◽  
Disease Modifying ◽  
Magnetic Resonance Imaging Mri

Background: Disease-modifying therapies (DMTs) for multiple sclerosis (MS) are approved for their ability to reduce disease activity, namely clinical relapses and signal changes on magnetic resonance imaging (MRI). Disease activity appears age dependent. Thus, the greatest benefit would be expected in younger people with MS (PwMS) whereas benefits in the elderly are uncertain. Methods: Real-world data were obtained from PwMS from the North American Research Committee on Multiple Sclerosis (NARCOMS) registry and the US Department of Veterans Affairs Multiple Sclerosis Surveillance Registry (MSSR). Results: 6948 PwMS were surveyed from NARCOMS, and the MSSR had 1719 participants. In younger adult PwMS 40-years old or less, 183 (61.4%) in NARCOMS and 179 (70.5%) in the MSSR were prescribed DMTs. Among PwMS over age 60, 1575 (40.1%) in NARCOMS and 239 (36.3%) in the MSSR were prescribed DMTs. More PwMS in the age group of 31–40 ( p = 0.035) and 41–50 ( p = 0.001) in the MSSR were using DMTs compared with PwMS of the same age groups in NARCOMS. Conclusion: These findings suggest that DMTs are under-utilized in the younger population and continue to be commonly prescribed in the elderly. Broader access may explain the higher prescription rate of DMTs in US veterans.

Factor Analysis of the Stability of Self Scale

1980 ◽  
Vol 47 (3_suppl) ◽  
pp. 1160-1162 ◽  
Author(s):  
Stephen L. Franzoi ◽  
Benjamin J. Reddish
Keyword(s):  
Factor Analysis ◽  
Factor Structure ◽  
Principal Components ◽  
Analysis Data ◽  
Factor Solution ◽  
The Stability

The factor structure of Rosenberg's Stability of Self Scale (1965) was investigated via principal components factor analysis. Data from 92 male and 171 female undergraduates yielded a one-factor solution, supporting Rosenberg's contention that the scale is unidimensional.

Validation of the NARCOMS Registry: pain assessment

2005 ◽  
Vol 11 (3) ◽  
pp. 338-342 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Gary Cutter ◽  
Tuula Tyry ◽  
Olympia Hadjimichael ◽  
Timothy Vollmer
Keyword(s):  
Multiple Sclerosis ◽  
Convergent Validity ◽  
Disease Duration ◽  
Self Report ◽  
Research Committee ◽  
Retest Reliability ◽  
The North ◽  
Disability Status ◽  
Pain Question ◽  
Test Retest Reliability

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.

scholarly journals Adaptasi Sanctification of Marriage Questionnaire: Versi Indonesia untuk Masyarakat Muslim

2021 ◽  
Vol 26 (1) ◽  
pp. 217-232
Author(s):  
Hepi Wahyuningsih ◽  
Dyna Rahayu Suci Pertiwi
Keyword(s):  
Factor Analysis ◽  
Confirmatory Factor Analysis ◽  
Construct Validity ◽  
Exploratory Factor Analysis ◽  
Factor Structure ◽  
Structure Stability ◽  
Validity And Reliability ◽  
Confirmatory Factor ◽  
The Stability ◽  
Composite Reliability

This study aims to adapt the Sanctification of Marriage Questionnaire for Muslims inIndonesia. Adaptation of the Sanctification of Marriage Questionnaire is carried out throughthe stages: translation, providing evidence of construct validity and reliability. Evidence of construct validity was carried out by exploratory factor analysis followed by MGCFA (Multi-Group Confirmatory factor Analysis). In this study, we used a composite reliability. Subjects to reveal the factor structure of sanctification of marriage were 160 married individuals, while the subjects to test the stability of factor structure consisted of 102 husbands and 111 wives. The result of exploratory factor analysis shows that the construct of sanctification of marriage has three factors / dimensions, namely: belief, perceived sacred qualities and manifestation of God. The structure stability of sanctification of marriage was then empirically tested by MGCFA. The results of MGCFA showed that the three factors / dimensions of sanctification of marriage proved stable. The composite reliability coefficient of the Sanctification of Marriage Questionnaire was in a good category. Further research can be carried out to provide evidence of construct validity with predictive validity and concurrent validity of the Sanctification of Marriage Questionnaire. Limitations in this study are discussed further.Keywords: exploratory factor analysis, multi-group confirmatory factor analysis, muslim,sanctification of marriage, scale adaptation

scholarly journals Treatment Discontinuation and Disease Progression with Injectable Disease-Modifying Therapies

2013 ◽  
Vol 15 (4) ◽  
pp. 194-201 ◽  
Author(s):  
Robert J. Fox ◽  
Amber R. Salter ◽  
Tuula Tyry ◽  
Jennifer Sun ◽  
Xiaojun You ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Disease Progression ◽  
Clinical Decision Making ◽  
Medication Compliance ◽  
Clinical Decision ◽  
Research Committee ◽  
The North ◽  
Disease Modifying Therapies ◽  
Patient Reported ◽  
Disease Modifying

Injectable first-line disease-modifying therapies (DMTs) for multiple sclerosis (MS) are generally prescribed for continuous use. Accordingly, the various factors that influence patient persistence with treatment and that can lead some patients to switch medications or discontinue treatment may affect clinical outcomes. Using data from the North American Research Committee on Multiple Sclerosis (NARCOMS) database, this study evaluated participants' reasons for discontinuation of injectable DMTs as well as the relationship between staying on therapy and sustained patient-reported disease progression and annualized relapse rates. Participants selected their reason(s) for discontinuation from among 16 possible options covering the categories of efficacy, safety, tolerability, and burden, with multiple responses permitted. Both unadjusted data and data adjusted for baseline age, disease duration, disability, and sex were evaluated. Discontinuation profiles varied among DMTs. Participants on intramuscular interferon beta-1a (IM IFNβ-1a) and glatiramer acetate (GA) reported the fewest discontinuations based on safety concerns, although GA was associated with reports of higher burden and lower efficacy than other therapies. Difficulties with tolerability were more often reported as a reason for discontinuing subcutaneous (SC) IFNβ-1a than as a reason for discontinuing IM IFNβ-1a, GA, or SC IFNβ-1b. In the persistent therapy cohort, less patient-reported disability progression was reported with IM IFNβ-1a treatment than with SC IFNβ-1a, IFNβ-1b, or GA. These findings have relevance to clinical decision making and medication compliance in MS patient care.

scholarly journals Developing a crosswalk between the RAND-12 and the health utilities index for multiple sclerosis

2019 ◽  
Vol 26 (9) ◽  
pp. 1102-1110 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Brenden Dufault ◽  
Tuula Tyry ◽  
Gary R Cutter ◽  
Robert J Fox ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Intraclass Correlation ◽  
Correlation Coefficients ◽  
Health Utilities Index ◽  
Research Committee ◽  
Health Utilities ◽  
The North ◽  
Many Instruments ◽  
Related Quality ◽  
Health Related

Background: Researchers studying health-related quality of life (HRQOL) in multiple sclerosis (MS) can choose from many instruments, but findings from studies which use different instruments cannot be easily combined. We aimed to develop a crosswalk that associates scores from the RAND-12 to scores on the Health Utilities Index—Mark III (HUI3) in persons with MS. Methods: In 2018, participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) registry completed the RAND-12 and the HUI3 to assess HRQOL. We used item-response theory (IRT) and equipercentile linking approaches to develop a crosswalk between instruments. We compared predicted scores for the HUI3 from each crosswalk to observed scores using Pearson correlations, intraclass correlation coefficients (ICCs), and Bland–Altman plots. Results: Of 11,389 invited participants, 7129 (62.6%) responded. Predicted and observed values of the HUI3 from the IRT-linking method were moderately correlated (Pearson r = 0.76) with good concordance (ICC = 0.72). However, the Bland–Altman plots suggested biased prediction. Predicted and observed values from the equipercentile linking method were also moderately correlated (Pearson r = 0.78, ICC = 0.78). The Bland–Altman plots suggested no bias. Conclusion: We developed a crosswalk between the RAND-12 and the HUI3 in the MS population which will facilitate data harmonization efforts.

The burden of mental comorbidity in multiple sclerosis: frequent, underdiagnosed, and undertreated

2009 ◽  
Vol 15 (3) ◽  
pp. 385-392 ◽  
Author(s):  
RA Marrie ◽  
R Horwitz ◽  
G Cutter ◽  
T Tyry ◽  
D Campagnolo ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Socioeconomic Status ◽  
Depression Scale ◽  
Epidemiologic Studies ◽  
Lower Socioeconomic Status ◽  
Research Committee ◽  
The North ◽  
Lower Socioeconomic ◽  
Mental Comorbidities ◽  
Mental Comorbidity

Background Mental comorbidity is common in multiple sclerosis (MS), but some studies suggest that mental comorbidity may be underrecognized and undertreated. Objective Using the North American Research Committee on MS Registry, we assessed the frequency of mental comorbidities in MS and sociodemographic characteristics associated with diagnosis and treatment of depression. Methods We queried participants regarding depression, anxiety, bipolar disorder, and schizophrenia. Depressive symptoms were assessed using the Center for Epidemiologic Studies Depression Scale (CESD); a score ≥21 indicated probable major depression. Results Mental comorbidity affected 4264 (48%) responders; depression most frequently (4012, 46%). Among participants not reporting mental comorbidity, 751 (16.2%) had CESD scores ≥21 suggesting undiagnosed depression. Lower socioeconomic status was associated with increased odds of depression (Income $15,000–30,000 vs >$100,000 OR 1.34; 1.11–1.62), undiagnosed depression (Income $15,000–30,000 vs >$100,000 OR 1.52; 1.08–2.13), and untreated depression (<high school vs postgraduate degree OR 3.13; 1.65–5.99). Conclusions Mental comorbidity remains underdiagnosed and undertreated in MS. Patients of lower socioeconomic status bear a disproportionate share of the burden of depression.

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