Objective:

Describe demographics and healthcare resource utilization (HCRU) across specialty vs non-specialty treatments centers for people with amyotrophic lateral sclerosis (pALS).

Background:

ALS is a rare, neurodegenerative condition that causes progressive functional loss and ultimately death. pALS require a range of pharmacological and non-pharmacological support from healthcare services. While specialist centers for ALS management exist within the United States (US), access for individuals is heavily location-dependent.

Design/Methods:

A 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 August 2024 (data collection ongoing). Neurologists from specialist centers and other settings completed an online questionnaire for consulting pALS seen during the study period, capturing demographics, clinical characteristics, and treatment history.

Results:

Forty-four neurologists provided data on 214 pALS. The mean (SD) age of pALS was 58.0 years (13.9), 58% were male, and 80% White/Caucasian. Of these pALS, 96 (45%) were treated at specialist ALS/Motor Neuron Disease centers. Among all pALS, 78% were prescribed drug treatment for ALS (specialist centers: 85%, other settings: 73%). Of those receiving treatment, 66% were prescribed riluzole formulations (52%, 78%), 36% IV or oral edaravone (45%, 28%), and 5% tofersen (7%, 3%). Additionally, 32% were prescribed antidepressants (36%, 28%), 30% pain medications (41%, 19%), and 21% anticonvulsants (28%, 16%). Overall, treated pALS were prescribed a mean (SD) 3.8 (4.1) drugs per person (4.6 [4.6], 3.1 [3.6]). Over the 12 months preceding the survey, pALS had attended a mean (SD) 8.9 (10.8) HCP consultations (12.3 [13.3], 6.1 [7.0]), and 26% had ≥1 ALS-related hospitalizations (33%, 20%).

Conclusions:

These initial findings highlight the complex treatment landscape for pALS in the US, with substantial use of specialist care and diverse pharmacological approaches reflecting the varied needs of patients in managing their disease.