Spotlight On the LSUHSC ALS Clinic, Providing Exemplary Interprofessional Care
Each year, an estimated 5,000 people in the United States are diagnosed with ALS, or amyotrophic lateral sclerosis, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The mean survival time from diagnosis is between two to five years, during which time symptoms and health impacts can change rapidly.
The LSUHSC ALS Clinic aims to help people with ALS live on their own terms for as long as possible and to help manage the symptoms of the disease. As an ALS Association Recognized Treatment Center, the clinic provides a national standard of best-practice interprofessional care.
Drs. Rima El-Abassi and Stephen Kantrow are medical directors of the clinic, part of a team of healthcare professionals who provide compassionate care in a supportive, family-oriented atmosphere. In addition to the neurologists, two social workers, a registered dietitian, an occupational therapist, a physical therapist, a respiratory therapist, a speech language pathologist and a patient care representative from the ALS Association make up the rest of the healthcare team.
Dr. Deidre Devier, Associate Professor of Clinical Neurology, has worked with the LSUHSC ALS clinic since 2018 and is actively involved in developing a research program to expand the boundaries of the clinic in partnership with patients and caregivers.
Dr. Stephen Kantrow calls Dr. Devier “the heart of the clinic.”
“Because ALS rapidly progresses in most patients, symptoms and health impacts can change frequently. Additionally, at some point, mobility becomes an issue, so it is key that we provide a place patients can see all of their providers in one setting. This clinic simplifies their healthcare by facilitating a visit with eight different healthcare professionals in one two-to-three-hour appointment,” said Dr. Devier.
Dr. Devier said the clinic works to serve as a partner to patients to maximize their health, functioning, and ability to use available therapies, equipment, exercises, and nutrition.
Dr. Devier, whose background is in mental health, said she was drawn to working at the clinic because she wants “to try to be there for these patients. There are not a lot of treatment options; in fact, there are only a few medications available to people with ALS. We strive to make things as good as they can be. Our goal is to make their burden less and help them feel supported. We bring humanity to the situation. We don’t focus on the morbid. Many of our patients begin their journey with us feeling anxious, but usually improve when we all work together. Where appropriate, we bring levity and humor to patient rooms.”
Patients sometimes have the opportunity to become advocates as well. One patient in particular was recently empowered to advocate for increased federal spending for ALS. Retired nurse Sharon Sauce, from Thibodaux, and other ALS patients from all over the state met with the staff of several Louisiana legislators, including U.S. Senators John Kennedy and Bill Cassidy and U.S. Representatives Garret Graves and Steve Scalise.
Sauce reached out to Dr. Devier after the meeting and said she was happy to have had the opportunity. “I realize I am in a better physical condition than most and want to make a difference where I can,” Sauce said.
Patients come from all over the state, as well as from Mississippi and Alabama and even the Florida panhandle. The clinic, located at 478 Johnson Street in the Seton Building, is held monthly. Patients come every three months for an appointment and the clinic has about 40 patients at any given time.
“The ALS clinical team works closely with patients to create a comprehensive clinical care plan, including respiratory evaluations, physical therapy, occupational therapy, nutrition, speech and swallowing, mental health, and access to resources,” Dr. Devier added.
“Once you are in a power wheelchair, it can be very hard to get anywhere. The silver lining of COVID was the new use of virtual visits. One of our patients was a woman in a raised house without a wheelchair ramp and we were able to treat her without ever seeing her in person,” she said.
Dr. Devier, who describes Dr. Kantrow as “amazing and compassionate,” said he has even gone to patients’ homes or to multiple hospitals, especially when patients are at the end of their lives.
The ALS Clinic is also a training ground for LSUHSC students. A medical student remains in the room throughout the appointment as the different healthcare specialists spend time with the patient and their caregivers. Students from the schools of Medicine and Allied Health gain valuable experience learning from those they see and take that knowledge and experience with an interprofessional team into the community.
Dr. Devier said she witnesses daily the tremendous need in terms of medical care and medical equipment for her patients.
“ALS is a unique diagnosis in that immediately upon diagnosis most people can receive social security disability benefits and qualify for Medicare. However, even with the best insurance, the cost of ALS is extreme. It can take eight weeks to obtain a wheelchair, and that wheelchair can cost thousands of dollars,” she said.
Dr. Devier describes the ALS community as generous, and said a robust loaner system has been created to share resources no longer needed by one person with another person who now faces a need for specialized equipment.
To support the purchasing of additional and much needed equipment and other similar assistance for ALS patients, please go to https://give.lsuhealthfoundation.org/givenow and select the ALS clinic.