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ALS Center’s at-home monitoring program, launched during pandemic, wins funding to expand and further assess benefits

As a nationally certified center of excellence for clinical care and research, Upstate’s ALS Research and Treatment Center offers multidisciplinary care. Multiple providers render services at each clinic visit which is proven to improve the quality of life and help ALS patients live longer.

But when COVID-19 hit and telemedicine was implemented, keeping the same high level of care became more complex. ALS Center Director Eufrosina Young, MD, said the clinic staff realized quickly that virtual visits alone were not sufficient to manage their patient population. There were technical challenges with different therapists engaging a patient on video conference platform. Pulmonary function laboratory services worldwide became unavailable to prevent risk of exposure from aerosol-generating procedures.

To solve the problem, in July 2020 the clinic launched a new home monitoring initiative with $5,000 in funding from the Upstate Foundations’ Tim Green Endowment to Defeat ALS. With the funding, the ALS Center purchased single patient-use, handheld turbine spirometers that use a cellphone application to test vital capacity.

Respiratory therapists from Upstate provide coaching online while patients are able to perform breathing tests from the safety of their homes. The real-time display of data is accessed through a clinical dashboard by providers at the center. Patients are able to test at a much greater frequency and efficiency which allows for more timely treatment should their care need to be adjusted based on their breathing function. Young said the new system followed a model used by the US Cystic Fibrosis Foundation.

Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. People with ALS eventually lose the ability to initiate and control muscle movement, which ultimately leads to total paralysis and death within two to five years of symptom onset. There is currently no cure for the disease. The cause of death in ALS is respiratory failure and monitoring pulmonary function is critical.

“Timing of interventions is critical for ALS patients, said Elizabeth Krisanda, executive director of the Upstate New York Chapter of the ALS Association, which works closely with Upstate’s clinic.

“Patients are typically seen every three months at the center, but their breathing capacity can decline significantly in that time,” she said. “For example, if a patient is losing their ability to swallow and needs a feeding tube, they need to have a certain level of breathing capacity to do so safely. If the patient declines past this point, it may be too late. The at-home monitoring is more likely to catch this type of thing so they can get the intervention they need when they need it.”

Young said from July 2020 to June 2021, the center monitored 24 patients and received feedback that patients, many of whom are incapacitated or were concerned about coming in due to Covid-19, liked the option of home monitoring.

"The pandemic presented a unique opportunity to set aside trepidation and embark on a partnership with our patients to find a better way of conducting our clinic,” Young said.

To keep the program going, Young secured a research grant from Mitsubishi Tanabe Pharma America in 2021. The grant, which totals over $300,000 for two years, has allowed the center to continue and expand the program. Young said the center has monitored 50 patients from home just this past year alone. The grant also includes a second site, Atrium Health in North Carolina, that is working to replicate Upstate’s program.

“At the end of two years, we hope to monitor 100 patients to make a determination if home monitoring is feasible and accurate and that in doing so, investing in this kind of technology and clinical care will actually translate into better outcomes,” Young said. As principal investigator of the study, Young hopes the data will support at-home monitoring as standard of care for ALS and be covered by insurance payors as medical necessity.

Upstate’s clinic has been part of the ALS Association’s network of Certified Treatment Centers of Excellence since 2005, and the designation signifies that the center exhibits the highest levels of established national standards of care. It is one of only 72 in the country and the only certified center in the 48 counties served by the Upstate Chapter.

Upstate’s ALS center staff provides specialized medical care, as well as occupational, physical, speech and language, dietary, spiritual palliative and respiratory therapy. Social services and counseling also are provided, as well as support groups for patients and their families. This collaborative environment provides patients with a comprehensive evaluation and treatment plan designed to maximize function and quality of life. Home monitoring is in line with delivering personalized care with the goal of increasing duration of survival and rendering ALS as a livable disease in the near future.

In support of its work and certification, Upstate’s clinic received $50,000 from the ALS Association and its Upstate New York Chapter in May 2022. The funding, which has been annual since 2016, supports clinical care and personnel development that are vital to maintaining the services of a fully staffed clinic.

Krisanda said that Upstate ALS Center will continue to receive that annual support as long as it maintains its certification as a Certified Treatment Center of Excellence.

“We strongly support the clinic because the team’s multi-disciplinary care is so valuable to our patients,” Krisanda said. “We serve patients across our 48 county service territory in Upstate New York and many of the people we serve travel from  in Buffalo, Rochester as well as Albany and the North Country to come here.

Young said the ALS Center, through the support of Neurology Chair Luis Mejico, MD, and the UHCC Medical Director Anuradha Duleep, MD, has seen tremendous growth both in staffing and patients this past year. That’s not to say there are more patients with ALS, just more people seeking out Upstate’s unique care.

“This growth we have experienced I believe is a direct impact of the quality of care we are able to deliver with at-home monitoring,” Young said.

Caption: ALS Center team members with at-home monitoring device that is now part of research study, from left, Dawn Dailey, Jeffrey Collins, Director Eufrosina Young and Juliann Mellen. Other center team members are Rabecca Coulter, Stephanie Lessun, Teri Mauler, George Slavinski and Ashley Vogler.