Timely ALS care in Florida

Jan. 30, 2018

Mayo Clinic in Jacksonville, Florida, has a multidisciplinary amyotrophic lateral sclerosis (ALS) clinic, providing a team approach for patients with that rapidly progressing disease. Appointments are coordinated so that patients see a neurologist specializing in ALS as well as a complement of allied staff in a single visit. The multidisciplinary clinic offers comprehensive and efficient treatment and support for patients with ALS.

"There is a very narrow time window for meaningful interventions to relieve the symptoms of ALS. It's important to address these changes in a timely manner," says Bjorn E. Oskarsson, M.D., a consultant in Neurology at Mayo Clinic's campus in Florida. "For example, if a patient ends up waiting months for a wheelchair evaluation and further months to get insurance approval, the patient might no longer be able to use the device by the time it arrives."

Mayo Clinic was among the first centers in the United States to create a multidisciplinary ALS clinic. The ALS Association has certified all three Mayo Clinic campuses, in Florida, Arizona and Minnesota, as Certified Treatment Centers of Excellence.

The multidisciplinary ALS clinic teams include:

  • Neurologists specializing in ALS
  • Nurse coordinators who arrange care for patients
  • Respiratory therapists who measure respiratory function and advise on respiratory equipment
  • Speech therapists who assist with swallowing difficulties and speech-generating devices
  • Dietitians who advise on foods appropriate for swallowing difficulties and on enteral and parenteral feeding
  • Physical therapists to assist with safety and mobility
  • Occupational therapists to assist with adaptive equipment
  • Social workers to help with navigating the health care system
  • Palliative care specialists
  • Representatives from the ALS Association to connect patients and their families with support groups and other resources

In addition, pulmonologists, otorhinolaryngologists and interventional radiologists at Mayo Clinic have expertise and experience with advanced respiratory care, tracheotomies and the placement of feeding tubes for patients with ALS.

"We meet together as a team and care for patients in a structured way. Our most recent patient survey shows that patients are very satisfied with this approach to their care. The multidisciplinary clinic is a sort of medical home for them," Dr. Oskarsson says.

The ALS treatment teams also include research coordinators. In addition to offering the opportunity for patients to participate in clinical research trials, investigators at Mayo Clinic's campus in Florida are following up on their discovery of a noncoding repeat expansion in the C9orf72 gene that is the most common cause of ALS. Every patient with ALS is asked to contribute specimens to further Mayo Clinic's efforts to find biomarkers and novel therapies for ALS.

"In addition to these large projects, we collect a lot of information from our patients to help us improve their quality of life — for example, finding ways to prevent falls," Dr. Oskarsson says.

Telemedicine for ALS

To further serve patients with ALS, Mayo Clinic's campus in Florida has launched a telemedicine initiative. After initial diagnosis in Jacksonville, patients with ALS can be followed remotely at a clinic in Pensacola, located in the Florida panhandle about five hours west of Jacksonville. A second remote clinic is planned for Panama City, about four hours west of Jacksonville.

"It's pretty common for patients to have difficulty getting back here to Jacksonville after they have received a diagnosis. Telemedicine is a great option for these patients," Dr. Oskarsson says. He and a nurse coordinator communicate with the patient using digital video cameras and other technology. A social worker and a respiratory therapist, who assesses breathing function, are with the patient at the remote clinic. "Based on the breathing function and on patient-reported rating scales, I give recommendations for treatment," Dr. Oskarsson says.

Whether patients are assessed remotely or in Jacksonville, the goal is to provide optimal care as the disease progresses. "With ALS, we might see a patient go from moderate disability to end-of-life care within a year," Dr. Oskarsson says. "At Mayo Clinic we take a holistic approach to respond to every patient's needs."