Health Status Perspectives in Amyotrophic Lateral Sclerosis

Background/Aims: The global perception of the health status (HS) of amyotrophic lateral sclerosis (ALS) patients before the initial diagnosis has not been addressed previously. Methods: We recorded the following at the first visit, before diagnostic information: (1) visual analog scale (VAS) of the EQ-5D; (2) the revised ALS functional rating scale (ALSFRS- R), bulbar (ALSFRSb), upper limb (ALSFRSul), lower limb (ALSFRSll), and respiratory (RofALSFRS-R) subscores; and (3) forced and slow vital capacities. Correlations were tested by the Pearson correlation test. Variables were compared between groups defined by the VAS median value. p 0.05 was considered significant. Results: Of the 156 patients included in the study (91 spinal-onset, 49 bulbar-onset, 16 axial/respiratory-onset; 95 men; mean onset age 63.9 ± 13 years; mean disease duration 18.4 ± 26.5 months), HS VAS was significantly lower in spinal-onset patients (p = 0.047), and particularly in spinal-onset women (p = 0.027). Disease duration had no influence. HS VAS was moderately correlated with ALSFRS, ALSFRSul and ALSFRSll (0.4 r p r = 0.171, p Conclusion: HS before diagnosis is mostly dependent on the perception of upper and lower limb function. A tool tailored to evaluate HS in bulbar-onset patients should be developed.
Neurodegener Dis 2017;17:323-329

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