ALS Focus Survey Results

Understanding Insurance Needs and Financial Burdens

Participants with ALS ranked the level of stress they felt when confronting various financial issues related to their ALS medical needs and health insurance.

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What Matters Most

People with ALS as well as caregivers are able to provide an assessment of ALS disease burden based on their experiences. The What Matters Most survey demonstrated that the inability to do activities and limitations with mobility or walking mattered most to people with ALS.

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Caregiver Needs

Current and past ALS caregivers reported which support programs they use, shared their top concerns, and evaluated their quality of life.

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People with ALS and caregivers reported their experiences with telehealth during the COVID-19 pandemic, and their preferences for using telehealth to access ALS care.

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People with ALS and caregivers reported which mobility equipment they use, how they covered the costs, and whether the equipment met their mobility needs for ALS. 

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