• COVID-19

    Maintaining quality care for patients with ALS — Lessons from the pandemic

By Susan Barber Lindquist

photo of Lou Gehrig $0.25 stamp

The efficiency and effectiveness of telemedicine exploded during the COVID-19 pandemic. For patients with Lou Gehrig's disease, also known as amyotrophic lateral sclerosis or ALS, telemedicine always has been an important piece of their medical care.

A recent study in Neurology by Mayo Clinic researchers offers one more proof point. Tests to monitor the respiratory status of patients with ALS can be performed remotely with superior results and high patient satisfaction.

"For patients with chronic disabling conditions, it is critical that we try to provide care for people with ALS that goes beyond the walls of the clinic. Technology is helping us provide that care to them wherever they are," says Nathan Staff, M.D., Ph.D., a Mayo Clinic neurologist and senior author of the study.

ALS is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing a loss of muscle control. At Mayo Clinic, patients with ALS participate in a clinic that offers access to neurologists, physiatrists, speech-language pathologists, dietitians, respiratory therapists, social workers and nurses.

Nathan Staff, M.D., Ph.D., sees patients at Mayo Clinic in Rochester, Minnesota.

"In effect, the ALS Clinic serves as a home base for our patients and their care partners," Dr. Staff explains.

Before the COVID-19 pandemic, patients typically were seen in person in the ALS Clinic for a half-day every three months. Then they could contact the team by telephone or through Patient Online Services, Mayo Clinic's patient portal, at any point between visits.

Unfortunately, as the disease progresses, people with ALS become more paralyzed, which makes transportation to the clinic more difficult. Harsh Midwest winters also can make traveling in Minnesota hazardous. Thus, even before the COVID-19 pandemic, efforts were underway to routinely provide telemedicine as part of the ALS Clinic in Rochester. 

The ALS care team started regular telemedicine patient visits mere months before the onset of the COVID-19 pandemic, allowing the clinic to transition to all-telemedicine care in March 2020. Today, a telemedicine option continues to be a standard way for people with ALS to maintain care when the disease makes it difficult to travel.

Because people with ALS commonly need help breathing, one challenge with telemedicine is the need to continually monitor patients' respiratory status to help a clinician make decisions about noninvasive ventilation support. The Mayo team developed a mailing system for respiratory monitoring. With this system, a home overnight oximetry machine was mailed to the patient and then returned to Mayo for interpretation. 

hand and forearm with device sensor attached to forefinger, and short wire connecting to digital display/wristband monitor
Easy to use overnight oximetry testing device was mailed to patients during the clinical trial, and now is a standard care option at Mayo Clinic.

In a study of 476 subjects, home overnight oximetry performed as well as, and in some cases better than, a spirometry test performed in the clinic. The home test also avoided infection concerns related to potential aerosolization of virus during spirometry, which requires the patient to blow into a tube in the presence of a clinician.

Patients also shared their opinions. In a survey, the home overnight oximetry system was so popular with patients that it has become the standard in the ALS Clinic at Mayo Clinic in Rochester.

"Members of our ALS Clinic team are always striving to provide new ways to care for our patients, and their quick adoption of telemedicine and mail-out home overnight oximetry approaches has clearly been a huge benefit," Dr. Staff says.

At Mayo Clinic in Florida, respiratory therapy service is provided by a vendor directly in patients' homes. At Mayo Clinic in Arizona, remote respiratory status monitoring is available. To enable continued care as the disease advances and to limit risks associated with travel, telehealth visits continue to be an important part of care for patients with ALS connecting with clinicians at any Mayo Clinic location.


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