On March 17, 2020, I entered my patients electronic medical record and hit the “Connect with Zoom” button in her Epic (Epic Systems Corporation) chart. About 20 seconds later, the face of my 28-year-old patient with advanced spinal muscular atrophy type 2 (SMA-2) appeared virtually and not live for the first time since I had met her some 10 years previously. She appeared well and her history supported that. We spent most of the time reviewing recent events and surveying her home ventilation equipment. She felt well and sleep was of good quality. She was performing her normal activities without dyspnea. Her mechanical insufflator-exsufflator was working fine, although she used it only as needed, and she was performing lung volume recruitment maneuvers with a resuscitator bag three times a day with assistance. Her mask for nocturnal NPPV was getting old, and she showed me where the straps were fraying. We noted that her bilevel device was now 8 years old and that she needed a new one. We concluded our conversation in 20 minutes and she blurted out: “Wow, that was easy. Thanks, Dr. Benditt.” I got off the phone and put in the order for a new mask and bilevel device with our clinic respiratory therapist. She received the equipment 48 hours later and sent an electronic message through her chart to let me know it had arrived. A total of five in-person visits including me and other providers had been cancelled and replaced by virtual visits. She has made one visit to the hospital in the last 3 months for an intrathecal nusinersen (Spinraza) injection that was done with a COVID-19 prescreening and full PPE.
Dr. Joshua O. Benditt
One week prior to our virtual visit, my university hospital had reduced in-person clinic visits to those deemed absolutely necessary due to the COVID-19 pandemic. Visits considered absolutely necessary included such patients as postoperative transplant visits and preoperative evaluations for urgent surgeries. All other patient visits were canceled with plans to reschedule them once the COVID-19 pandemic was controlled. As the breadth and depth of the pandemic became apparent, a very rapid ramp-up of “virtual visits” via telemedicine capacity was rolled out. I had not previously used telemedicine, and the learning curve was steep, although once in place, the technology was straightforward from the provider perspective. The telemedicine visits for our hospital for the entire year of 2019 totaled about 800. In the month of April of 2020 we engaged in 40,000 telemedicine visits. This explosive growth of telemedicine implementation has occurred around the country and world during the COVID-19 pandemic (Olayiwola JN, et al. JMIR Public Health Surveill. 2020, May 29. doi: 10.2196/19045). This recent growth of telemedicine in the US has been fueled by the need for social distancing and quarantine, the lack of universal testing and COVID-19 case tracking, and the realization by CMS that coverage of telemedicine services had to be expanded rapidly to allow for continued patient care in the setting of stay-at-home orders. A rapid role out of application technology support and online training classes for health-care providers was undertaken. Privileges for telemedicine virtual visits were approved when providers completed the informational online modules and set up their HIPPA compliant Zoom accounts (Zoom Video Communications, San Jose, CA). All of us had minor stumbles initially with the equipment, software, and getting the patients connected online. After four or five visits, the process started to click and has become rather routine. Many providers and patients found this quite a positive development in terms of patient-provider visits but a question arose almost immediately: “Will this continue to be supported by insurers and allow us to integrate this practice into our outpatient clinic setting once the pandemic was controlled?” Time with tell, but an opportunity has presented itself.
For patients with neuromuscular disease and respiratory failure, telemedicine is a technology that may be particularly attractive for a number of reasons. First, patients with neuromuscular respiratory failure are likely at a particularly high risk of death if they develop full-blown COVID-19 infection. Development of acute respiratory distress syndrome (ARDS) on top of underlying neuromuscular respiratory failure is likely to be particularly deadly, although, very fortunately, there are no published reports of widespread infections in patients with neuromuscular respiratory disease. We have known for many decades that pneumonia is the leading cause of death for these patients. Second, patients with neuromuscular respiratory failure often find it quite difficult to come to the hospital for clinic visits. Mobilizing equipment, caregivers, and transportation can take days to arrange. For this reason, many neuromuscular clinics provide a multidisciplinary/multi-provider half-day visit to reduce the need to come into the hospital for multiple separate visits. Lastly, there are relatively few respiratory health-care providers in the United States and around the world who focus on patients with neuromuscular respiratory disease. Many neuromuscular clinics and providers will, therefore, have a very wide patient catchment area. For instance, my practice, based in Seattle, Washington, includes patients from Alaska, Montana, Idaho, and Wyoming. In-person hospital visits more than once per year may be virtually impossible.
Telemedicine is a methodology that has long been considered helpful in the arena of home ventilation and, in fact, we have been using some telemedicine technologies for some time (Casavant DW, et al. J Telemed Telecare. 2014;20[8]:441). Telemedicine (telehealth) includes the use of electronic information and communications technologies to provide and support health care when distance separates the participants. For instance, monitoring of nocturnal ventilation via downloads from Internet-connected noninvasive or invasive ventilation devices, overnight oximetry, and even phone calls from durable medical equipment providers during a home visit would be considered telemedicine. Many of us have been using these methods for many years. It is really the face-to-face “virtual visit” frequency that the COVID-19 pandemic has accelerated. This is a crucial advance in the process of telehealth because we may be able to reduce visits to our clinics from once every 3 to 6 months to perhaps once per year if support for virtual visits by insurers continues and if home monitoring can expand to include accurate home measurement of patient CO2 levels by either end-tidal CO2, transcutaneous CO2, or point of care arterial or capillary blood gases, as well as home pulmonary function monitoring. Measurement of CO2 levels and pulmonary function has generally been done at the hospital or in the clinic although there is no reason that with home visit support from appropriate services (that might even include durable medical equipment companies) that this could not be accomplished. This is not to say that there are not hurdles to the application of telehealth in the neuromuscular disease and home ventilation population. Not all patients have the equipment or technology savvy to participate in virtual visits, and not all insurers cover these visits even now during COVID-19. However, I imagine a future where a significant number of visits for patients with neuromuscular respiratory disease and home ventilation needs could be performed virtually. I envision that this would reduce patient and home caregiver travel burdens, make more efficient use of health-care provider time, expand the number of patients that a neuromuscular respiratory disease practitioner could serve, and perhaps reduce health-care expenditures per patient. This may be a real health-care bright spot in the huge difficulties of COVID-19. Fingers crossed.
Dr. Benditt is Medical Director of Respiratory Care Services and Professor of Medicine, University of Washington Medical Center, Seattle, Washington.