Spanish validation of the telephone assessed Expanded Disability Status Scale and Patient Determined Disease Steps in people with multiple sclerosis.

Clinical monitoring Expanded disability status scale Multiple sclerosis Patient determined disease steps Patient-reported outcome Telephone questionnaire

Journal

Multiple sclerosis and related disorders
ISSN: 2211-0356
Titre abrégé: Mult Scler Relat Disord
Pays: Netherlands
ID NLM: 101580247

Informations de publication

Date de publication:
Jan 2019
Historique:
received: 20 07 2018
revised: 13 11 2018
accepted: 17 11 2018
pubmed: 26 11 2018
medline: 5 4 2019
entrez: 26 11 2018
Statut: ppublish

Résumé

The Expanded Disability Status Scale (EDSS) and Patient Determined Disease Steps (PDDS) are two of the most widely disability scales used in multiple sclerosis (MS). When physical visits are unavailable, remote evaluation through telephone interview may be helpful. We aimed to translate both scales into Spanish, and to 1) validate the telephone EDSS and PDDS, and 2) explore the association pattern between both telephone questionnaires. 103 patients underwent a neurological examination to generate the EDSS and completed the PDDS questionnaire. Telephone questionnaires (EDSS, PDDS) were performed within 15 days. Feasibility and psychometric properties of both telephone questionnaires included internal consistency, acceptability, inter-rater agreement and validity. Test-retest reliability was evaluated in 36 patients. Both scales showed excellent internal consistency and test-retest reliability. The agreement between conventional and telephone assessments in ambulatory impaired patients (EDSS > 4.0) was good for EDSS (kappa = 0.72) and excellent for PDDS (kappa = 0.93); fully ambulatory patients (EDSS ≤ 4.0) showed lower values (kappa = 0.24, and 0.54, respectively). Full agreement was higher for telephone PDDS than telephone EDSS (78% vs 44%). Overestimation of disability was more frequent in fully ambulatory patients. Strong correlation was found between telephone questionnaires (rho = 0.88; p < 0.001). The pattern of association was not isomorphic, but a PDDS cut-off of 3 identified with high accuracy patients with ambulatory impairment. Telephone EDSS and PDDS questionnaires for Spanish patients are valid tools to assess disability status in MS and offer complementary information. Patients with ambulatory impairment are those who benefit the most from a remote assessment.

Sections du résumé

BACKGROUND BACKGROUND
The Expanded Disability Status Scale (EDSS) and Patient Determined Disease Steps (PDDS) are two of the most widely disability scales used in multiple sclerosis (MS). When physical visits are unavailable, remote evaluation through telephone interview may be helpful. We aimed to translate both scales into Spanish, and to 1) validate the telephone EDSS and PDDS, and 2) explore the association pattern between both telephone questionnaires.
METHODS METHODS
103 patients underwent a neurological examination to generate the EDSS and completed the PDDS questionnaire. Telephone questionnaires (EDSS, PDDS) were performed within 15 days. Feasibility and psychometric properties of both telephone questionnaires included internal consistency, acceptability, inter-rater agreement and validity. Test-retest reliability was evaluated in 36 patients.
RESULTS RESULTS
Both scales showed excellent internal consistency and test-retest reliability. The agreement between conventional and telephone assessments in ambulatory impaired patients (EDSS > 4.0) was good for EDSS (kappa = 0.72) and excellent for PDDS (kappa = 0.93); fully ambulatory patients (EDSS ≤ 4.0) showed lower values (kappa = 0.24, and 0.54, respectively). Full agreement was higher for telephone PDDS than telephone EDSS (78% vs 44%). Overestimation of disability was more frequent in fully ambulatory patients. Strong correlation was found between telephone questionnaires (rho = 0.88; p < 0.001). The pattern of association was not isomorphic, but a PDDS cut-off of 3 identified with high accuracy patients with ambulatory impairment.
DISCUSSION CONCLUSIONS
Telephone EDSS and PDDS questionnaires for Spanish patients are valid tools to assess disability status in MS and offer complementary information. Patients with ambulatory impairment are those who benefit the most from a remote assessment.

Identifiants

pubmed: 30472411
pii: S2211-0348(18)30512-1
doi: 10.1016/j.msard.2018.11.018
pii:
doi:

Types de publication

Journal Article Validation Study

Langues

eng

Sous-ensembles de citation

IM

Pagination

333-339

Informations de copyright

Copyright © 2018. Published by Elsevier B.V.

Auteurs

Nuria Solà-Valls (N)

Center of Neuroimmunology, Service of Neurology, Hospital Clinic Barcelona and Neuroimmunology Program, Institut d'Investigació Biomèdica August Pi i Sunyer (IDIBAPS), University of Barcelona. Villarroel 170, 08036, Barcelona, Spain. Electronic address: nusola@clinic.cat.

Mikel Vicente-Pascual (M)

Center of Neuroimmunology, Service of Neurology, Hospital Clinic Barcelona and Neuroimmunology Program, Institut d'Investigació Biomèdica August Pi i Sunyer (IDIBAPS), University of Barcelona. Villarroel 170, 08036, Barcelona, Spain.

Yolanda Blanco (Y)

Center of Neuroimmunology, Service of Neurology, Hospital Clinic Barcelona and Neuroimmunology Program, Institut d'Investigació Biomèdica August Pi i Sunyer (IDIBAPS), University of Barcelona. Villarroel 170, 08036, Barcelona, Spain.

Elisabeth Solana (E)

Center of Neuroimmunology, Service of Neurology, Hospital Clinic Barcelona and Neuroimmunology Program, Institut d'Investigació Biomèdica August Pi i Sunyer (IDIBAPS), University of Barcelona. Villarroel 170, 08036, Barcelona, Spain.

Sara Llufriu (S)

Center of Neuroimmunology, Service of Neurology, Hospital Clinic Barcelona and Neuroimmunology Program, Institut d'Investigació Biomèdica August Pi i Sunyer (IDIBAPS), University of Barcelona. Villarroel 170, 08036, Barcelona, Spain.

Eloy Martínez-Heras (E)

Center of Neuroimmunology, Service of Neurology, Hospital Clinic Barcelona and Neuroimmunology Program, Institut d'Investigació Biomèdica August Pi i Sunyer (IDIBAPS), University of Barcelona. Villarroel 170, 08036, Barcelona, Spain.

Elena H Martínez-Lapiscina (EH)

Center of Neuroimmunology, Service of Neurology, Hospital Clinic Barcelona and Neuroimmunology Program, Institut d'Investigació Biomèdica August Pi i Sunyer (IDIBAPS), University of Barcelona. Villarroel 170, 08036, Barcelona, Spain.

María Sepúlveda (M)

Center of Neuroimmunology, Service of Neurology, Hospital Clinic Barcelona and Neuroimmunology Program, Institut d'Investigació Biomèdica August Pi i Sunyer (IDIBAPS), University of Barcelona. Villarroel 170, 08036, Barcelona, Spain.

Irene Pulido-Valdeolivas (I)

Center of Neuroimmunology, Service of Neurology, Hospital Clinic Barcelona and Neuroimmunology Program, Institut d'Investigació Biomèdica August Pi i Sunyer (IDIBAPS), University of Barcelona. Villarroel 170, 08036, Barcelona, Spain.

Irati Zubizarreta (I)

Center of Neuroimmunology, Service of Neurology, Hospital Clinic Barcelona and Neuroimmunology Program, Institut d'Investigació Biomèdica August Pi i Sunyer (IDIBAPS), University of Barcelona. Villarroel 170, 08036, Barcelona, Spain.

Albert Saiz (A)

Center of Neuroimmunology, Service of Neurology, Hospital Clinic Barcelona and Neuroimmunology Program, Institut d'Investigació Biomèdica August Pi i Sunyer (IDIBAPS), University of Barcelona. Villarroel 170, 08036, Barcelona, Spain.

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