Dataset Information

The multiple sclerosis rating scale, revised (MSRS-R): development, refinement, and psychometric validation using an online community.

ABSTRACT: BACKGROUND: In developing the PatientsLikeMe online platform for patients with Multiple Sclerosis (MS), we required a patient-reported assessment of functional status that was easy to complete and identified disability in domains other than walking. Existing measures of functional status were inadequate, clinician-reported, focused on walking, and burdensome to complete. In response, we developed the Multiple Sclerosis Rating Scale (MSRS). METHODS: We adapted a clinician-rated measure, the Guy's Neurological Disability Scale, to a self-report scale and deployed it to an online community. As part of our validation process we reviewed discussions between patients, conducted patient cognitive debriefing, and made minor improvements to form a revised scale (MSRS-R) before deploying a cross-sectional survey to patients with relapsing-remitting MS (RRMS) on the PatientsLikeMe platform. The survey included MSRS-R and comparator measures: MSIS-29, PDDS, NARCOMS Performance Scales, PRIMUS, and MSWS-12. RESULTS: In total, 816 RRMS patients responded (19% response rate). The MSRS-R exhibited high internal consistency (Cronbach's alpha?=?.86). The MSRS-R walking item was highly correlated with alternative walking measures (PDDS, ??=?.84; MSWS-12, ??=?.83; NARCOMS mobility question, ??=?.86). MSRS-R correlated well with comparison instruments and differentiated between known groups by PDDS disease stage and relapse burden in the past two years. Factor analysis suggested a single factor accounting for 51.5% of variance. CONCLUSIONS: The MSRS-R is a concise measure of MS-related functional disability, and may have advantages for disease measurement over longer and more burdensome instruments that are restricted to a smaller number of domains or measure quality of life. Studies are underway describing the use of the instrument in contexts outside our online platform such as clinical practice or trials. The MSRS-R is released for use under creative commons license.

SUBMITTER: Wicks P

PROVIDER: S-EPMC3502161 | biostudies-other | 2012

REPOSITORIES: biostudies-other

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The multiple sclerosis rating scale, revised (MSRS-R): development, refinement, and psychometric validation using an online community.

Wicks Paul P Vaughan Timothy E TE Massagli Michael P MP

Health and quality of life outcomes 20120618

<h4>Background</h4>In developing the PatientsLikeMe online platform for patients with Multiple Sclerosis (MS), we required a patient-reported assessment of functional status that was easy to complete and identified disability in domains other than walking. Existing measures of functional status were inadequate, clinician-reported, focused on walking, and burdensome to complete. In response, we developed the Multiple Sclerosis Rating Scale (MSRS).<h4>Methods</h4>We adapted a clinician-rated measu ...[more]

PMID: 22709981

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Project description:BackgroundAn automated web-based assessment and monitoring system ( www.psynary.com ) has been developed to assist non-specialist clinicians in managing common mood and anxiety disorders. Psynary promotes the use of standardised outcome measures to assess symptom severity and optimise treatments with the aim of improving outcomes and enabling faster recovery. This paper analyses the results from two parallel studies in New Zealand and Japan (OptiMA-1 NZ and Japan) to assess the validity of the R8 Depression scale, one of the system's core outcome measures.MethodsClinical samples were recruited from a public secondary care and a private psychiatry clinic. Participants completed the outcome measures for the study via the online Psynary system. The R8 Depression scale is a 30-item questionnaire which includes all symptom domains covered in the ICD-10 classification of depression. The Patient Health Questionnaire (PHQ-9) was completed at the same time points as the R8 Depression, with a smaller sample also completing a paper-based Quick Inventory of Depressive Symptomatology (QIDS-SR16). Internal validity was quantified via Cronbach's alpha and Guttman lower bounds method. External validation against the PHQ-9 and QIDS used the Pearson's and Kendall's correlation coefficients. Severity categories were set using a multivariate regression model.Results270 patients participated in the study and completed a maximum of 1 baseline and 5 reviews within a 90-day period, giving a total of 1124 assessments with the PHQ-9 also being completed in 1053 of these assessments. R8 Depression normative data was also collected from 204 non-clinical volunteers with 187 of these also completing the PHQ9. Internal reliability scores were all higher than 0.9 (n = 1328). There was overall good external validity when comparing the R8 Depression to the PHQ-9, with a correlation of 0.91 for the combined normative and clinical samples (n = 1240).ConclusionsThe R8 Depression has been developed as a patient-rated outcome measure for depression for administration on an online system called "Psynary". It has high internal and external validity against current widely used scales. Further work is underway to determine the sensitivity to change of the R8 Depression.

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Project description:BackgroundMedication literacy is one of the key indicators that can affect the self-management of medications and medication safety. This study aimed to revise the Chinese Medication Literacy Scale for hypertensive patients (C-MLSHP) and test the reliability and validity of the revised scale.MethodsWe revised the C-MLSHP by several methods, i.e., focus group discussion, expert consultation, patient interview, and pilot study, based on the established evaluation index system of medication literacy for hypertensive patients. Then, a formal survey using the revised Chinese Medication Literacy Scale for hypertensive patients (C-MLSHP-R) was carried out on hypertensive patients from hospitals and community healthcare centers in Changsha city of China to test its reliability and validity. The reliability was evaluated with Cronbach's α coefficient, split-half reliability, and test-retest reliability. The validity was evaluated with content validity, construct validity, convergent validity, discriminant validity, and criterion-related validity.ResultsThe C-MLSHP-R contained 18 items within four domains, i.e., the knowledge domain included four items, the attitude domain had three items, the skill domain involved seven items, and the practice domain included four items. A total of 339 hypertensive patients participated in the formal survey. The results showed that the Cronbach's α coefficient of C-MLSHP-R was 0.802, and for each domain ranged from 0.639 to 0.815. The split-half reliability coefficient of C-MLSHP-R was 0.709, and for each domain ranged from 0.648 to 0.792. The test-retest reliability coefficient of C-MLSHP-R was 0.851, and for each domain ranged from 0.655 to 0.857. The I-CVI of each item ranged from 0.833 to 1.000, the S-CVI/Ave of C-MLSHP-R was 0.981, the S-CVI/UA was 0.889, and for each domain ranged from 0.958 to 1.000. Confirmatory factor analysis results showed that the model fitted well. The convergent validity of C-MLSHP-R was acceptable, and the discriminant validity was good. The criterion coefficient between C-MLSHP-R and C-MLSHP was 0.797, and for each domain ranged from 0.609 to 0.755.ConclusionCompared with C-MLSHP, the C-MLSHP-R with 18 items was much shorter for measuring, and had decreased reliability within the acceptable range and better validity, which was more appropriate and time-saving to assess the medication literacy level for hypertensive patients scientifically and conveniently.

Dataset Information

The multiple sclerosis rating scale, revised (MSRS-R): development, refinement, and psychometric validation using an online community.

Publications

The multiple sclerosis rating scale, revised (MSRS-R): development, refinement, and psychometric validation using an online community.

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