People with ALS and their caregivers who participated in a recent ALS Focus survey said that telehealth appointments improved their quality of life by saving them time and money, and that the appointments are just as good as in-person health care visits.

According to the survey results, 62 percent of respondents with ALS said telehealth improved their quality of life somewhat or a lot. Sixty-four percent of all respondents said that telehealth saved them a lot of time and nearly half said that telehealth saved them some or a lot of money on things like transportation, lodging, missed work, and co-pays.

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Since telehealth access expanded at the onset of the COVID-19 pandemic, 78 percent of people with ALS participated in a telehealth visit, and while respondents tended to prefer in-person visits, satisfaction with telehealth visits illustrate the need for continued access to telehealth going forward.

“These results are reasonable when considering the types of treatments and procedures people with ALS need as part of their care,” said Dr. Sarah Parvanta, director of ALS Focus.

“We suspect preferences around telehealth and quality of care may be more nuanced and depend on factors such disease progression, the type of provider someone is seeing, where they live, and even the quality of someone’s home internet connection. The data can allow researchers to ask those questions and can help make sure we are empowering people with ALS to see the health care providers they want to see in the manner that makes sense to them,” she added.

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Notably, 23 percent of respondents reported use of telehealth to see a health care provider for ALS across state lines. The ALS Association recently joined in a call for governors across the country to grant waivers to physicians to continue seeing out-of-state patients via telehealth, a flexibility that was granted during the pandemic.

The results come from an online ALS Focus survey of 387 people with ALS and caregivers between June 3, 2021 – September 17, 2021.

Register to participate in future ALS Focus surveys.