New telemedicine program aims to make life easier for patients with Lou Gehrig’s disease
By Tiffany Wilson
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 crucial 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 amyotrophic lateral sclerosis, or ALS. Patients can interact with their doctors and therapists as if they are in the multidisciplinary ALS center at the UF Health Jacksonville 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, M.D., a College of Medicine – Jacksonville associate professor of neurology and the principal investigator 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 for patients to exercise, eat and even breathe, they require a team of experts who can evaluate the effects of the disease 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.
Since there are only four ALS clinics in Florida, patients often have to travel long distances to be seen. Patients come to Jacksonville from as far away as Orlando and Tallahassee, taking on the expense of traveling and getting a hotel room in order to receive care.
The strength of the new telemedicine program depends on the skill and empathy of the nurse who travels to the homes, sets up the video equipment and assesses the patients. In this case, Rebecca Brittain, R.N., is not only a seasoned nurse who’s comfortable with technology, she’s also intimately familiar with ALS. Her 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 in a wheelchair, 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.”