The following is a summary of “Health-related quality of life across disease stages in patients with amyotrophic lateral sclerosis: results from a real-world survey,” published in the January 2024 issue of Neurology by Stenson et al.
Researchers started a retrospective study to assess how amyotrophic lateral sclerosis (ALS) disease progression, as measured by King’s, Milano-Torino Staging (MiToS), and physician judgment, impacts HRQoL in both people with ALS, persons living with ALS (pALS) and their care partners (cALS).
They obtained data from the Adelphi ALS Disease Specific Programme (DSP)TM, a cross-sectional survey conducted in real-world clinical settings (July 2020 and March 2021) in Europe and the United States, involving neurologists, patients with pALS, and cALS.
The results showed that 142 neurologists contributed data for 880 patients with pALS. Significant negative correlations were observed between all three clinical staging systems and (European Quality of Life) Five Dimension Five Level Scale (EQ-5D-5L) utility scores and visual analog scale (VAS) ratings. Although not all variations were significant, 5-item Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-5) scores demonstrated a gradual increase in HRQoL impairment at each disease stage, irrespective of the staging system. Later stages exhibited high levels of fatigue and considerable activity impairment. Progression in pALS disease states corresponded to a decline in HRQoL and an increased burden for cALS.
Investigators concluded that despite a stage-independent decline in HRQoL for pALS and cALS, managing symptoms like pain and fatigue may offer avenues for maximizing QoL throughout disease progression.
Source: link.springer.com/article/10.1007/s00415-023-12141-y