(63) Employment status and care requirements among people with amyotrophic lateral sclerosis in the United States

Background: : Amyotrophic lateral sclerosis (ALS) is a rare, fatal condition characterized by progressive motor neuron degeneration. People living with ALS (pALS) require multidisciplinary care alongside substantial lifestyle changes relating to loss of function. Many pALS are forced to adjust or stop their employment. Extensive caregiver support, home modifications, and use of various medical equipment may be required, leading to changes in employment status.

Objective: : Describe the effect ALS has on employment status, and care requirements for pALS in the United States (US).

Methods: : Secondary analysis of data collected between March-December 2024 were drawn from the Adelphi Real World ALS Disease Specific Programme™, a cross-sectional survey of US neurologists and pALS. Neurologists reported on demographics, employment status, and caregiver support for consecutively consulting pALS. Analyses were descriptive.

Results: : Neurologists (n=48) provided data for 401 pALS. Mean (standard deviation [SD]) age of pALS was 55.8 (14.4) years; 62% were male, and 74% were White. Mean (SD) ALSFRS-R score was 33.1 (10.8).

Physicians reported 9% of pALS were in full-time employment, while 81% of pALS were working part-time, unemployed, retired, or on disability. Of those out of full-time employment, 61% of cases were directly due to ALS (49% of total sample). Of the 87 pALS in full (n=39) or part-time employment (n=49), 41% required some adaptations or modifications to their workplace due to their ALS; most commonly a need for extra/longer breaks (15%).

Overall, 68% of pALS were receiving caregiver support, requiring a mean (SD) 51.8 (42.7) hours/week of care; of these, 51% were cared for by their partner/spouse. Professional caregiver(s) provided support for 17% of these pALS, with a mean (SD) of 34.0 (35.9) hours/week of care. Caregivers assisted with a range of activities, the most reported being transportation (60%) and home maintenance (54%). Half of pALS made home modifications; and 72% of pALS utilized mobility aids.

Conclusions: : ALS directly affected employment for 49% of pALS, resulting in an inability to work full-time; many of whom also required support from caregivers as well as use of supportive aids and modifications. The need for these additional supports coupled with a loss of income through employment changes may result in increased out of pocket costs for pALS.

Sponsorship:: ALS Wave II DSP is a wholly owned Adelphi Real World Product. Mitsubishi Tanabe Pharma America, Inc. was one of the multiple subscribers to the DSP, and funded the analyses described here.