Telemedicine Pilot Program makes care more accessible for ALS patients

Tasks such as traveling  to appointments or waiting in doctors’ offices can be so debilitating for patients dealing with Lou Gehrig’s disease that some avoid scheduling critical checkups altogether.

A new UF Health Jacksonville research program – the first of its kind in the nation – aims to eliminate those barriers by offering in-home appointments to patients with the condition also known as ALS, short for amyotrophic lateral sclerosis. Patients can interact with their doctors and therapists as if they are in the multidisciplinary ALS center at the UF Health Neuroscience Institute, thanks to an advanced, highly secure video system.

While the concept of telemedicine has been tested in various specialties, this telemedicine program – a research study funded by The ALS Association Florida Chapter, Inc. and the Florida Department of Health – is the first multidisciplinary program to use a hybrid system of “store and forward” video recordings for ALS patients. The system is expected to be easier and more cost-effective than a live video feed.

“Other places have done telemedicine for other conditions, but it’s usually live,” said Michael Pulley, MD, a University of Florida College of Medicine – Jacksonville associate professor of neurology and leader of the study. “When you have a multidisciplinary team, that would be hard to do logistically, and it would limit the number of patients the team could serve.”

ALS is a neurological disease that attacks the nerve cells. It causes muscles to weaken and progressively takes away the brain’s ability to control muscle movement. As it becomes increasingly difficult to exercise, eat and even breathe, a patient is best served by a team of people who can evaluate the various effects the disease is having and the various therapies that can help.

In the pilot program, each member of the ALS multidisciplinary team reviews the video and provides medical input. Then Pulley formulates a combined opinion and therapeutic plan. In a follow-up appointment, he presents the information to the ALS patient via a safe, encrypted live video feed. He and the patient can answer each other’s questions and discuss the plan as if the patient were in his office.  

The strength of the program depends on the skill and empathy of the person who travels to the homes, sets up the video equipment and assesses the patients. And Pulley couldn’t have found a better nurse: Rebecca Brittain, RN, is not only a seasoned nurse who’s comfortable with technology, she’s also intimately familiar with ALS.

Brittain’s mother had ALS, and Pulley was her doctor.

“You don’t know what it’s like unless you’ve been there, and I have. I moved my mom into my house and took care of her,” Brittain said.

As much as she and her mother appreciated the care they received in their clinical visits, Brittain’s mom dreaded the work it took to get through the day.

“Once the disease progresses and the patient is wheelchair bound, it can be stressful to the patient and to the patient’s family, because they have to bring all their equipment, sometimes rent a van and leave the comforts of their home,” Brittain said. “It’s exhausting. My mom would be tired for a week after her visits.”

Since there are only four ALS clinics in Florida, patients often have to travel long distances to be seen. They come from as far as Orlando and Tallahassee, taking on the expense of traveling and getting a hotel room in order to receive care.

With the telemedicine program, Brittain is the only person traveling. She brings two iPads and portable Wi-Fi hot spots, setting them up to video the patient from two angles while she performs an exam. The video footage is saved with multiple encryptions to ensure only the intended providers will see it.

The video is broken into sections so providers can review the portions that apply to them rather than watching the entire video. One appointment will include information for specialists in:

  • Neurology

  • Nutrition

  • Physical therapy

  • Occupational therapy

  • Respiratory health

  • Speech

  • Case management

  • Hospice

The hope is that the telemedicine program will better serve patients, especially those who have to travel a long distance to be seen. Since there is no additional cost to be visited at home, it will mean tremendous financial savings to those patients. It will also prevent the stress and exhaustion some patients associate with doctor visits.

And those aren’t the only benefits researchers expect to see.

Pulley said ALS clinics are so uncommon in Florida because they don’t bring in revenue.

“It involves a lot of people. A speech therapist, a physical therapist, occupational therapists and others. Regularly assembling the required number of specialists for the ALS clinic is a challenge,” he said. “It’s not profitable. But we want to provide this service because it greatly helps people with ALS.”

By using the telemedicine program, Pulley expects providers will be able to review more cases and serve patients who otherwise would not have been able to participate in clinical visits. That will increase the number of patients able to take advantage of the program.

The cost of the telemedicine pilot, which is initially serving 20 patients and spanning from January to June, is $156,000. That covers equipment costs as well as Brittain’s training, travel and salary. In the world of medicine, that’s a very low cost for a program that could greatly impact access to care.

Physicians throughout the United States have already taken notice. Pulley said more than 20 specialists attended a talk about the program at the Northeast ALS Association meeting earlier this year.

Once the initial study is complete, Pulley wants to continue the telemedicine program and the research.

Given the recent emphasis on telemedicine programs, Pulley said he is hopeful the state of Florida will continue the funding and that there will be other avenues of funding available in the future. 

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