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Telehealth, mHealth Give ALS Patients a New Way to Receive Care

Penn State Health's TeleALS program enables patients living with ALS and their caregivers to meet with specialists and manage care at home, while giving care providers an opportunity to treat them from a distance.

Source: ThinkStock

By Eric Wicklund

- A Pennsylvania health system is using a telehealth and remote patient monitoring platform to enable patients living with ALS to receive care at home – a welcome resource for the patients, their care providers and the many specialists who treat them.

“They are in their space, not our space,” says Zachary Simmons, MD, a neurologist and director of the ALS Clinic at Penn State Health, which launched its TeleALS program in 2018. “The conversations with patients and their caregivers are much, much easier when they are at home.”

Simmons, who had been using virtual care technology to treat patients on his own, tapped into the Hershey, PA-based health system’s partnership with American Well to launch the TeleALS program, now reportedly one of only three in the country to use telemedicine. His goal was to create an easier way to care for the health system’s 200 patients with ALS, who often had to travel hours every three months for day-long meetings with several doctors and specialists.

“It’s an exhausting trip for them,” he says. “It creates a lot of strain and stress on them.”

Amyotrophic lateral sclerosis (ALS), often called Lou Gehrig’s disease, is a chronic and uncurable nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control. The progressive disease requires treatment by a team of care providers, including neurologists, nurses, dietitians, physical and occupational therapists, speech pathologists, behavioral health counselors, respiratory therapists, social workers and palliative care specialists.

READ MORE: mHealth’s Promise: Mobility With Meaning

Typically, those patients and their caregivers travel to the clinic and meet individually with each care provider on one day, a long and tiring process for the patients and their caregivers and challenging as well for the ALS center’s care team.

But with a telehealth platform, Simmons says, those meetings can be handled at home.

“It’s much more relaxed,” he says. “And we get to see the patients in their homes, which can help” with some of the care management tasks, such as behavioral health and mobility tests.

Simmons, who estimates that 50 patients, or 25 percent of the center’s patient population, now use the platform, says telehealth offers three distinct benefits:

  1. It enables the clinic to substitute regularly scheduled in-person visits with virtual visits, saving patients and their caregivers the hassle and expenses of driving to the clinic.
  2. It gives patients and providers the opportunity to schedule sessions as needed at any time, for such issues as emergency care or care management changes. That’s especially helpful for the behavioral health specialists who treat depression and anxiety in patients and their caregivers much more often than every three months.
  3. And it gives the clinic the option of reducing the length of in-person clinic visits or cutting them short if the patient is too tired, by enabling them to schedule some of the sessions online before or after the in-person visit.

While reducing stress on the patients, Simmons points out that the telehealth platform also helps the caregivers, who can spend upwards of 11 hours a day caring for a loved one with ALS.

READ MORE: Analysis Gives Telehealth High Marks for Helping Neurologists

And it helps the care providers as well, giving them an opportunity to see more patients via video and to see those who require more care more often. As well, it reduces the number of patients and caregivers at the clinic, whose waiting rooms and offices can get crowded.

Simmons says patient satisfaction with the platform is high, while providers are taking a bit longer to get used to the system. Many are still used to the hands-on approach of treating patients with ALS, he says, and need a while to learn how the technology works and how it can be used to replicate the in-person visit.

That said, telehealth can’t and won’t fully replace the in-person visit. All patients have to meet with their care team in person before moving any services to telehealth, Simmons says, and some treatments will always require that the doctor be able to place hands on the patient. But those visits can be scheduled more conveniently.

Simmons says the teleALS program is also using mHealth devices and remote patient monitoring services to bring more opportunities for care into the home. They’re using wireless devices – some created by the health system specifically for the program – to enable care providers to measure such things as mobility, speech, breathing and swallowing patterns remotely. They’re also working on mHealth devices that will help them track and analyze a patient’s gait, since those diagnosed with ALS often have problems with falling early on in the disease’s progression.

“We’re either inventing (digital health tools) or we’re finding them one at a time,” he says, adding that he expects the platform to become better as newer devices are developed that give providers more opportunities to capture data at home.

And that’s the goal: Keeping patients at home, giving them and their caregivers the support they need through a long and difficult journey.

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