Time from amyotrophic lateral sclerosis symptom onset to key disease milestones: analysis of data from a multinational cross-sectional survey

• Published in: Amyotrophic lateral sclerosis and frontotemporal degeneration 2024-04, Vol.25 (3-4), p.1-357
• Main Authors: Gebrehiwet, Paulos, Brekke, Johan, Rudnicki, Stacy A, Mellor, Jennifer, Wright, Jack, Earl, Lucy, Ball, Nathan, Iqbal, Halima, Thomas, Owen, Castellano, Giorgio
• Format: Article
• Language: English
• ISSN: 2167-8421; 2167-9223
• DOI: 10.1080/21678421.2023.2297795

To determine the average time from Amyotrophic Lateral Sclerosis (ALS) symptom onset to 11 pre-defined milestones, overall and according to ALS progression rate and geographic location. Data were drawn from the Adelphi Real World ALS Disease-Specific Programme , a point-in-time survey of neurologists caring for people living with ALS (pALS) conducted in France, Germany, Italy, Spain, the United Kingdom and the United States from 2020-2021. ALS progression rate was calculated using time since symptom onset and ALS Functional Rating Scale Revised score. Survey results were available for N = 1003 pALS (progression rate for N = 867). Mean time from symptom onset was 3.8 months to first consultation, 8.0 months to diagnosis, 16.2 months to employment change (part-time/sick leave/retirement/unemployment), 17.5 months to use of a walking aid, 18.5 months to first occurrence of caregiver support, 22.8 months to use of a wheelchair, 24.6 months to use of a communication aid, 27.3 months to use of a respiratory aid, 28.6 months to use of gastrostomy feeding, 29.7 months to use of eye gaze technology and 30.3 months to entering a care facility. Multivariate analysis indicated significant effects of fast ( slow) progression rate on time to reach all 11 milestones, as well as US ( European) location, age, body mass index and bulbar onset ( other) on time to reach milestones. pALS rapidly reached clinical and disease-related milestones within 30 months from symptom onset. Milestones were reached significantly faster by pALS with fast versus slow progression. Geographic differences were observed.