Characterizing changes in functioning in Brazilian patients with ALS using a comprehensive ICF core set

Abstract

Purpose To longitudinally describe the impact of amyotrophic lateral sclerosis (ALS) using a core set based on the International Classification of Functioning, Disability and Health (ICF).

Patients and Methods Between May 2021 and August 2022, 42 Brazilian patients with ALS (21 men/21 women, mean age 59.92 years, 23.8% with bulbar-onset ALS and 76.2% with spinal-onset ALS) were included. Patients diagnosed at least 6 months previously were assessed using 42 ICF categories at baseline and every six months thereafter for 16 months. The Friedman test was used to compare three time points, followed by Wilcoxon post hoc analyses. The Bonferroni method was applied. P-values ≤0.05 were considered significant. Overall and subgroup (bulbar-onset/spinal-onset ALS) analyses were performed.

Results Significant changes were found in 24/42 ICF categories. The most affected Body Functions included respiratory muscle functions (b445), power of muscles of one limb (b7301), muscle power (b730) and gait pattern (b770). Early disabilities involved pain sensation (b280) and respiratory functions. Limitations in Activities and Participation included transferring oneself (d420), hand and arm use (d445), dressing (d540), washing oneself (d510) and speaking (d330).

Conclusion This ICF core set may help determine key facilitators and barriers to functioning and disability in ALS, guiding rehabilitation efforts.

IMPLICATIONS FOR REHABILITATION This study used a 42-item core set from the International Classification of Functioning, Disability and Health (ICF) to describe changes in functioning over time in patients with amyotrophic lateral sclerosis (ALS).

The most affected categories included respiratory muscle functions, muscle power, gait pattern, transferring, hand/arm use, dressing, washing and speaking.

Early disabilities included pain sensation and respiratory functions.

This ICF core set can guide rehabilitation by identifying key facilitators and barriers to functioning and disability in ALS.