Describe telehealth use for ALS and characteristics of users.

Penn State Health provides ALS telehealth care via synchronous videoconferencing into patients’ homes supplement or replace in-person care.

ALS clinic patients were offered participation in a telehealth study.  Those who enrolled could choose to use or not use telehealth.  Comparisons were made between those who had at least one telehealth visit and those who did not. Additionally, utilization metrics were recorded by the telehealth platform beginning October 2018. 

114 patients enrolled in the telehealth study. Patients who participated in at least 1 telehealth visit (n=38) had lower ALS Functional Rating Scale-Revised scores (21.4 vs. 28.1, p<0.001) and forced vital capacity (52.9% vs. 64.5%, p=0.012) and were more likely to use non-invasive ventilation (60.0% vs. 25.0%, p=0.001) or live 2 hours or more from the clinic (34.2% vs. 16.0%, p=0.028) than patients who never had a telehealth visit. Telehealth metrics were recorded on 53 patients and their caregivers, who participated in 1 to 6 visits each, totaling 98 telehealth visits. There were2 to 13 ALS telehealth visits total per month in the ALS clinic. Participating patients lived, on average, 52 miles from clinic (range: 7-188 miles), with 13% living more than 100 miles from the clinic. Patients who had in-person visits over the same period lived an average of 35 miles from the clinic, and only 1.4% had a travel distance of more than 100 miles. 

Telehealth is a viable alternative for ALS care for patients unable or unwilling to travel. Patients with lower physical functioning are more likely to utilize telehealth. Telehealth patients generally lived farther from ALS clinic than those making in-person visits, supporting the use of this platform for those for whom travel would be the greatest burden.