Contribution to the translation and reliability analysis of the Self-Administered Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised, for European Portuguese

European Portuguese Translation and validation of the Self-Administered ALSFRS- R

  • Maria da Assunção Coelho Matos University Of Aveiro https://orcid.org/0000-0002-8976-0625
  • Isabel Maria Monteiro Costa
  • Raquel Carmo Portinha
  • Beatriz Costa Afonso
  • Katia Coimbra Barbosa
  • Carla Sofia Lima Gouveia
  • Pedro Miguel Ferreira Sa-Couto
Keywords: Amyotrophic Lateral Sclerosis, Self-administered ALSFRS-R, Functionality, Quality of life

Abstract

Objective: To contribute to the translation of the self-administered ALSFRS-R - European Portuguese version (ALSFRS-R: EP), and to analyse its reliability to enable its use by ALS patients in Portugal.

Methods: The study was developed in 3 phases. Phase 1: Translation and cultural adaptation of the self-administered ALFRS-R; Phase 2: Content validation by study participants; Phase 3: Exploratory factor analysis (EFA), analysis of its internal consistency and test-retest reliability.

Results: According to a panel of experts (N=6), a CVI of 100% were obtained for all ALSFRS-R: EP items. A sample of 18 people with ALS (13 male) fulfilled the test and evaluated its items regarding its clarity, comprehension, difficulty, and relevance, obtaining values varying from 8.6 and 8.9, 8.7 and 8.9, 8.5 and 8.8, and 8.5 and 8.9, respectively. The EFA revealed three factors representing the following domains: (1) bulbar function; (2) fine and gross motor function; and (3) respiratory function. The instrument total score and its subscales presented good internal consistency (Cronbach'sα: ranging from 0.72 to 0.92 in the test; from 0.70 to 0.95 in the retest) and good to excellent test-retest reliability (Kendall tau: ranging from 0.58 to 0.99). Considering the scale total score for the test, no statistical differences were observed between females and males nor between bulbar ALS and medullar ALS. The correlation between the total score and age showed to be significant and negative (-0.53).

Conclusions: The Self-Administered ALSFRS-R: EP version was successfully translated, validated, and presented good to excellent reliability results, with similar EFA structure to other studies. It will allow its use by European Portuguese ALS patients, enabling their health professionals to monitor the disease progression at home.

Author Biographies

Maria da Assunção Coelho Matos, University Of Aveiro

Speech and Language Therapist; Assistant Professor at School of Health Sciences (ESSUA), University of Aveiro, Edifício 30, Agras do Crasto - Campus Universitário de Santiago, 3810-193 Aveiro, Portugal. Center for Health Technology and Services Research (CINTESIS@RISE), University of Aveiro, Portugal.

Isabel Maria Monteiro Costa

Speech and Language Therapist; Assistant Professor at School of Health Sciences (ESSUA), University of Aveiro, Edifício 30, Agras do Crasto - Campus Universitário de Santiago, 3810-193 Aveiro, Portugal. Center for Health Technology and Services Research (CINTESIS@RISE), University of Aveiro, Portugal.

Raquel Carmo Portinha

Speech and Language Therapist at Multiclínica, Moimenta da Beira, Portugal;

Beatriz Costa Afonso

Speech and Language Therapist at Centro Psicoterapêutico Crescer e Saber, Tondela, Portugal;

Katia Coimbra Barbosa

Speech and Language Therapist at Centro de Recursos para a Inclusão - Associação do Porto de Paralisia Cerebral (CRI - APPC), Porto, Portugal;

Carla Sofia Lima Gouveia

Speech and Language Therapist at the Rehabilitation Service of the Centro Hospitalar Tondela-Viseu, E.P.E., Avenida Rei D. Duarte, 3504 509 – Viseu, Portugal;

Pedro Miguel Ferreira Sa-Couto

Researcher and Assistant Professor, Center for Research and Development in Mathematics and Applications (CIDMA), Department of Mathematics, University of Aveiro (DMAT), Portugal.

Published
2023-04-28
How to Cite
Matos, M. da A., Costa, I. M., Portinha, R., Afonso, B., Barbosa, K., Gouveia, C. S., & Sa-Couto, P. M. (2023). Contribution to the translation and reliability analysis of the Self-Administered Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised, for European Portuguese. Journal of Statistics on Health Decision, 5(1), e28483. https://doi.org/10.34624/jshd.v5i1.28483
Section
Original Articles