Contribution to the translation and validation of the Self-Administered
Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised, for
European Portuguese
Abstract
Objective: To contribute to the validation of the self-administered
ALSFRS-R - European Portuguese version (ALSFRS-R: EP), and to analyse
its reliability in order 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: Analysis of 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 with an average between 8.6 and 8.9, 8.7 and
8.9, 8.5 and 8.8, and 8.5 and 8.9, respectively. The instrument total
score and its subscales presented good internal consistency (Cronbach’s
α: from 0.72 to 0.92 in the test; from 0.70 to 0.95 in the retest) and
reliability (Kendall tau: from 0.575 to 0.990). 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. It will allow its use by Portuguese ALS
patients and enabling their health professionals to monitor the disease
progression at home.