Describing the Amyotrophic Lateral Sclerosis US Population and Use of Supportive Aids and Interventions: Results from a Real-World Survey
Author(s)
Malgorzata Ciepielewska, MS1, Polina Da Silva, MSc1, Jack Wright, MSc2, Nathan Ball, BS2, Halima Iqbal, BS2, Ciara Ringland, MSc2, Luke Burniston, BS2.
1Mitsubishi Tanabe Pharma America, Inc., Jersey City, NJ, USA, 2Adelphi Real World, Bollington, United Kingdom.
1Mitsubishi Tanabe Pharma America, Inc., Jersey City, NJ, USA, 2Adelphi Real World, Bollington, United Kingdom.
OBJECTIVES: Characterize the demographic, clinical, and treatment profiles of people with amyotrophic lateral sclerosis (pALS), including differences in use of supportive aids in specialty vs non-specialty treatment centers.
METHODS: Secondary analysis was conducted using data drawn from the Adelphi Real World ALS Disease Specific Programme™, a cross-sectional survey of US neurologists and pALS conducted between March and December 2024. Neurologists from specialist centers and other settings completed an online questionnaire for consulting pALS seen during the study period, capturing demographics, treatment usage, and use of supportive aids/interventions. Additional oversample data were collected on pALS using either intravenous (IV) or oral edaravone. Analyses were descriptive.
RESULTS: Forty-eight neurologists provided data on 401 pALS (random sample=275; oversample=126). The mean (standard deviation [SD]) age of pALS was 55.8 (14.4) years; 62% were male and 74% were White/Caucasian. Mean (SD) time from symptom onset to ALS diagnosis was 7.9 (9.2) months. Physicians considered 42% of pALS as early stage, 50% middle stage, and 8% late stage. ALS Functional Rating Scale-Revised mean (SD) score was 33.0 (10.9). At time of survey, 70% of random sample pALS were prescribed treatment for their ALS. Of these, 63% were prescribed riluzole, 23% oral edaravone, and 17% IV edaravone. Neurologists consulted with 43% of these pALS in ALS/motor neuron disease specialist centers (SC) vs 57% in non-specialist centers (NSC). Of all pALS, 72% were using mobility aids (SC: 77%; NSC: 68%); 36% were using communication aids (SC: 47%; NSC: 28%); 32% were using therapeutic interventions (SC: 43%; NSC: 24%); and 50% were using respiratory aids (SC: 58%; NSC: 44%).
CONCLUSIONS: These findings describe the consulting pALS population in the US, highlighting the substantial and varied use of supportive aids/interventions, with a greater number of pALS who consulted in SC using expensive mobility and communication aids.
METHODS: Secondary analysis was conducted using data drawn from the Adelphi Real World ALS Disease Specific Programme™, a cross-sectional survey of US neurologists and pALS conducted between March and December 2024. Neurologists from specialist centers and other settings completed an online questionnaire for consulting pALS seen during the study period, capturing demographics, treatment usage, and use of supportive aids/interventions. Additional oversample data were collected on pALS using either intravenous (IV) or oral edaravone. Analyses were descriptive.
RESULTS: Forty-eight neurologists provided data on 401 pALS (random sample=275; oversample=126). The mean (standard deviation [SD]) age of pALS was 55.8 (14.4) years; 62% were male and 74% were White/Caucasian. Mean (SD) time from symptom onset to ALS diagnosis was 7.9 (9.2) months. Physicians considered 42% of pALS as early stage, 50% middle stage, and 8% late stage. ALS Functional Rating Scale-Revised mean (SD) score was 33.0 (10.9). At time of survey, 70% of random sample pALS were prescribed treatment for their ALS. Of these, 63% were prescribed riluzole, 23% oral edaravone, and 17% IV edaravone. Neurologists consulted with 43% of these pALS in ALS/motor neuron disease specialist centers (SC) vs 57% in non-specialist centers (NSC). Of all pALS, 72% were using mobility aids (SC: 77%; NSC: 68%); 36% were using communication aids (SC: 47%; NSC: 28%); 32% were using therapeutic interventions (SC: 43%; NSC: 24%); and 50% were using respiratory aids (SC: 58%; NSC: 44%).
CONCLUSIONS: These findings describe the consulting pALS population in the US, highlighting the substantial and varied use of supportive aids/interventions, with a greater number of pALS who consulted in SC using expensive mobility and communication aids.
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
HSD16
Topic
Health Service Delivery & Process of Care
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, SDC: Neurological Disorders