Article In Brief
Neurology departments in academic medical centers nationwide face large backlogs in neurology procedures—including epilepsy surgery, botulinum toxin injections, deep brain stimulation, and brain tumor resection—that had been cancelled in response to COVID-19. Here's how they're addressing the backlogs.
As hospitals and clinics slowly began to re-open after the COVID-19-induced shutdown, neurologists have been scrambling to treat patients whose procedures were cancelled because of the pandemic. During COVID-19, each health system defined “elective” for itself and created its own rules for resuming surgeries and other procedures.
At University of California, San Francisco (UCSF), elective procedures resumed in late April but, neurologists there said, working through thousands of cancelled surgeries will take months.
“I wouldn't say that we are back to normal because we have a humongous backlog from not admitting people for so long,” said Paul A. Garcia, MD, director of clinical epilepsy services and professor of neurology at UCSF Weill Institute for Neurosciences. “Everybody has a backlog, so our backlog is competing against everybody else's backlog.”
The backlog situation depends in part on how the term “elective” was defined by a hospital or neurology practice. Most hospitals temporarily cancelled elective procedures to reduce exposure risk to clinicians, staff and patients, and/or to conserve resources to accommodate a surge of COVID-19 patients. But decision-making on what constituted “elective” varied widely.
Patient-management decisions reflect the volume of COVID-19 cases in a given hospital, the availability of staff and equipment, and, in some cases, a neurologist's own decisions about whether a procedure was needed immediately.
For most neurologic procedures, there was no triage guidance for a pandemic when COVID-19 emerged. During the crisis, subspecialty leaders moved quickly to consider a question they had not previously faced—under what circumstances, can a neurologic procedure appropriately be postponed?—and publish guidance for their colleagues.
In interviews with Neurology Today, neurologists involved in decisions about epilepsy surgery, botulinum toxin injections, deep brain stimulation, and other procedures shared their experiences, their strategies for the immediate future, and the lessons they have learned in recent weeks.
Epilepsy specialists are juggling many factors as they decide which patients get care first when capacity is limited.
For example, UCSF begin performing some elective surgeries in late April, about the same time that video EEG was resumed on a limited basis. Dr. Garcia said patients were prioritized if they met two criteria—a high likelihood that their seizures would be stopped completely by surgery and an expectation that they would need only a short hospital stay.
He and his colleagues are making decisions based on patient-specific factors rather than a firm guideline. “We haven't become too granular because there are so many factors than can impact a decision,” he said.
For example, as a general rule, patients who require intracranial monitoring are postponed because they might require long hospital stays, while patients who need lesionectomies are easier to treat now because they do not. That said, some patients who required intracranial monitoring before surgery got an early slot as UCSF re-opened.
“They have already been able to come in for a relatively quick admission because we knew, based on their seizure patterns, that they would have seizures in a hurry and that they would have a pretty good chance of moving forward with surgery,” Dr. Garcia said. “So we can't use the kind of procedure that a person needs as any kind of an absolute guide.”
Accommodating all patients who need procedures for epilepsy is less daunting than it might be because so many patients—about a third to a half of those for whom a procedure is recommended, Dr. Garcia estimated—are opting out for the time being. “Some people are afraid of coming into the hospital during this time and, pretty much regardless of what kind of epilepsy they have and what kind of procedure they would need, they just don't want it,” he said.
That worries Kathryn A. Davis, MD, FAAN, director of the epilepsy monitoring unit and epilepsy surgical program and assistant professor of neurology at the University of Pennsylvania.
“We have not had patients knocking down our doors,” Dr. Davis said. “We all are fearful that patients will be undertreated because of their fear of coming into a hospital during the time of COVID-19. I have patients that I'm very concerned about, and I do think we need to do these evaluations soon.”
When Penn's surgical program began to reopen, patients who receive vagus nerve stimulation therapy—both new devices and battery replacements—were prioritized because the outpatient surgery procedures do not require an overnight hospital stay.
The disruption caused by the shutdown has prompted Dr. Davis and her colleagues to engage frequently by video or telephone with patients whose evaluations were interrupted by the shutdown. Surgical nurse managers and social workers are helping with this.
“All of these patients that are on the pathway are getting seen frequently via telemedicine so that we can check in with them, make sure that they're safe, and also continue to understand what their risks really are,” she said.
That allows the clinical team to know which patients are having fewer or more seizures while they wait for the evaluation to resume. “It's important for them from a psychological standpoint to know that we are still here and continuing to take care of them,” she said. “I am going to make sure that no one falls by the wayside and doesn't continue to be seen.”
In an interview on May 8, Dr. Davis said scalp EEGs were expected to start soon. “We are trying to stratify patients by risk so that, when we start to do these procedures again, patients that are in the highest risk of injury or death from their epilepsy would be prioritized,” she said.
Meanwhile, surgical evaluations are advancing slowly because postponed ancillary outpatient tests, such as functional MRI and PET scans, have to be rescheduled. “We have been trying to be creative for some testing,” Dr. Davis said. “Our neuropsychologists have been doing everything they can do over telemedicine and the in-person part of that testing will be completed as soon as they are able to see patients again safely.”
Botulinum Toxin for Migraine
Whether onabotulinumtoxinA (Botox) to treat migraine is considered an elective procedure varies from one state, health system, and neurologist to the next. “This has been a huge controversy within the headache world,” said Deena Kuruvilla, MD, assistant professor of neurology at Yale School of Medicine. “Half of the community says it's not elective because if somebody misses their treatment, it twears off and the patient will end up in the emergency department. And half of the community is saying we can get on video and give them equally effective options for treatment.”
Depending on where they stand on the issue, neurology practices are facing a huge backlog of patients needing botulinum toxin treatments when their communities come out of lockdown—or simply working in a few extra appointments that were missed.
As COVID-19 bore down on New York City, Mount Sinai Health System stopped all elective procedures, including botulinum toxin treatments for patients with migraine. “We have a lot of people crying on the phone about that,” said Mark W. Green, MD, FAAN, professor of neurology, anesthesiology and rehabilitation medicine at Icahn School of Medicine at Mount Sinai.
Neurologists at Mount Sinai decided to switch patients, if possible, to a calcitonin gene-related peptide (CGRP) inhibitor, which patients can administer on their own. Some insurance companies have been reluctant to pay for a CGRP inhibitor if a patient had already been approved for botulinum toxin, however, forcing Dr. Green and his colleagues to push back.
For one thing, allowing patients to be treated in the clinic would violate the city's stay-at-home order; for another, doing so would require personal protective equipment (PPE) needed in the health system's emergency department and intensive care units. “We can't take it away from them,” Dr. Green said in an interview on May 7.
The Miami-Dade County area has also been a COVID-19 hotspot, but neurologists in the University of Miami Health System have had more flexibility. Patients who use botulinum toxin to treat migraine were asked to schedule telehealth visits to assess whether the treatment can be postponed, and non-pharmaceutical options—trigger management, stress and relaxation techniques and others—were encouraged.
Teshamae Monteith, MD, FAAN, chief of the headache division at University of Miami's Miller School of Medicine, continued to provide botulinum toxin injections for many patients throughout the two-month lockdown. “I was seeing the majority of my patients because migraine is one of the most disabling conditions worldwide,” she said.
Dr. Monteith, associate professor of neurology, found it difficult to implement the American Migraine Foundation's recommendation, issued on March 21, that patients consider postponing and rescheduling all non-emergent procedures for at least the next eight weeks. These injections are scheduled at three-month intervals and, for some patients, the treatment's effectiveness starts wearing off before the next injection is due.
“If they're having severe migraine attacks two weeks prior to their (scheduled) visit and you delay it eight weeks, they're going to be in very bad shape,” Dr. Monteith said. “That's evidence that that patient cannot go without treatment.”
She stratified patients based on their history with the treatment and other factors:
- Patients who have a history of emergency department visits and/or overuse of medication when botulinum toxin wears off received injections on their regular schedule.
- Patients who have a partial benefit to botulinum toxin, sufficient that it reduces the level of disability, received injections on their regular schedule.
- Patients who have been successfully treated with regular botulinum injections for many years were postponed on the possibility that they would not need treatment until the shutdown ended.
- Older patients and those with comorbidities who were at high risk of severe illness if they contracted COVID-19 were postponed if possible.
- Patients who had possible COVID-19 symptoms or exposure to the virus were required to be tested—and shown negative— before botulinum toxin would be given.
Altogether, Dr. Monteith estimated that she treated about 70 percent of her patients during the lockdown.
When COVID-19 first emerged in Connecticut, Dr. Kuruvilla found many of her patients treated with botulinum toxin did not want to risk infection by coming to the clinic; she used telehealth visits to suggest alternatives.
“But as time went by, more of my patients were calling me, literally begging for me to do their Botox,” she said. “So I went through my own schedule and looked for anybody who was due that had been delayed and I added on extra Botox days so that folks wouldn't land in the emergency room with severe migraine.”
Dr. Kuruvilla also practices at the VA Connecticut Healthcare System, which took a different approach. “The VA has come up with a department-wide decision to convert all their Botox patients to CGRP inhibitors,” she said. “They do not want their patients coming into the clinic for these procedures.”
Children's Mercy Hospital in Kansas City has not yet experienced a COVID-19 surge, but it did stop offering elective procedures, including botulinum toxin, for several weeks. In mid-April, based on the COVID-19 numbers in the community, the hospital began slowly opening for treatments.
“We tried to limit to more emergent needs, the kids who were almost debilitated to the point they were bedridden and couldn't function normally without Botox,” said Gina L. Jones, DO, director of the hospital's neurology clinic. “It was maybe one or two a week.”
In May, the clinic re-opened but was not overrun by pent-up demand, said Dr. Jones, clinical associate professor of pediatrics at the University of Missouri-Kansas City School of Medicine and clinical associate professor of neurology at the University of Kansas School of Medicine. Some parents chose to postpone their child's appointment rather than risk exposure to the virus. “In the earlier weeks (of the pandemic), we were just canceling without having a plan so some of those parents are calling for more emergent Botox, and those are the kids we are working in now,” she said.
The hospital added two acute-procedure clinics a week to treat children who need acupuncture or nerve blocks to relieve suffering.
Brain Tumor Treatments
The patient, suffering a low-grade glioma and seizures that were becoming more frequent, was notified the day before his scheduled surgery in late March: Because of COVID-19, all non-urgent procedures were cancelled until further notice.
“If you tell a young person he has a brain tumor and he's having seizures, surgery seems pretty urgent, right?” said Amy A. Pruitt, MD, FAAN, division chief for general neurology and professor of neurology at the Hospital of the University of Pennsylvania.
Dr. Pruitt supported the health system's protocols for triaging procedures during the shutdown period. “On the whole, the situation poses a lot of dilemmas that have resulted in different thinking about your obligation to the individual patient versus your obligation to the bigger community,” she said.
In that particular case, the nature of the patient's surgery would have required discharge to a rehabilitation facility; because of the risk of COVID-19 infection at such facilities, the risk of proceeding with surgery outweighed the risk of waiting. The surgery occurred in early May, six weeks later than originally scheduled.
In some cases, patients and families opted to postpone urgent procedures that the health system would have allowed to proceed. Dr. Pruitt cited the case of an older patient who, coming to Penn for a second opinion, was recommended for a second surgery for greater tumor removal. Because of pandemic protocols, no family members would be allowed in the hospital.
“When apprised that the person would have to be alone in the hospital, they decided instead to go with bevacizumab, which was a major change in what the procedure probably would have been,” she said.
In another case, an older person with many comorbidities would have required extensive peri-operative care. Because of the pared-down staff available to offer that level of care, a biopsy was performed instead of a bigger resection.
“All of these are instances in which, taking into account resources and the greater utilization of the hospital, decisions had to be made that resulted, we hope, in no long-term difference in outcome, although it's really hard to know,” Dr. Pruitt said. “They were all people who, on another day, would have been operated on right away.”
Writing in the Journal of Neuro-Oncology, neurosurgeons at Mount Sinai Hospital in New York, the COVID-19 epicenter for many weeks in the spring, described their decision-making for three cases in which they were unable to provide the standard of care. “As the pandemic marches forward into an unclear future, the definitions of ‘emergent’ and ‘elective’ procedures are not always so straightforward and as neurosurgeons, when to operate and when to delay becomes a complex decision-making process,” they wrote.
The only procedures permitted at Mount Sinai were emergency cases that required special approval from hospital leadership. The only neurosurgical procedures taking place were those that surgeons deemed necessary to avoid impending death or irreversible harm to the patient. They used a decision-tree to determine whether surgery should proceed.
At NYU Langone Health, all patients who required emergent or urgent operations—such as patients who were just diagnosed with a brain tumor—received surgery, Sylvia C. Kurz, MD, PhD, interim director of neuro oncology at the Laura and Isaac Perlmutter Cancer Center, said in an email.
Elective surgical procedures were postponed on a case-by-case basis, after a discussion by the brain tumor board and approval by the neurosurgery chair. “In some cases—for example, patients with low-grade gliomas or meningiomas who are asymptomatic—we determined that the tumors are unlikely to grow to a dangerous size by postponing the surgery for a month or two,” she said.
NYU Langone neuro-oncology patients requiring radiation for newly-diagnosed glioblastomas, brain metastases, or similar urgent indications, were treated according to their regular schedule throughout the shutdown. Patients for whom medical treatments including chemotherapies were recommended, oral or alternative treatment regimens were offered when possible. This reduced the number of visits to the infusion unit and reduced the number of patients present at the Cancer Center on any given day.
“However, in cases, where there was no good alternative available and/or in patients who were enrolled on clinical trials that required in-office treatments at the Perlmutter Cancer Center, we most often decided to proceed and offered these treatments to patients,” Dr. Kurz said.
Throughout the pandemic, patients and staff were and are required to adhere to strict safety and contact precautions implemented throughout NYU Langone Health, Dr. Kurz added, with the goal of minimizing patient and staff exposure to the virus.
Deep Brain Stimulation
Neurologists who needed to adjust DBS settings for patients with Parkinson's disease or other movement disorders such as essential tremor have provided limited programming via telemedicine during COVID-19. Some patients needed to go to a neurology clinic for the adjustment, and in at least one case, parking-lot care was the modality.
Karlo J. Lizarraga, MD, MS, director of the motor physiology and neuromodulation program at the University of Rochester Medical Center (URMC), had asked one patient with essential tremor to come to the clinic for device programming. When the patient was too afraid to come into the waiting room, Dr. Lizarraga agreed to meet him at his car.
“So I came out there with my programmer,” he said. “I asked him to take his mask off so I could examine him better. I also asked him to keep his arms up while holding his drink and performing different movements so I could see the tremor in different positions.”
Dr. Lizarraga expected that the car door or window would need to be open, but he found it was not necessary. “I was able to make changes to the DBS program through the car window—I actually was a little surprised,” he said. “He was happy.”
At University of Florida Health in Gainesville, the COVID-19 shutdown affected about 100 patients who needed battery replacements for their DBS devices, said Michael S. Okun, MD, FAAN, professor and chair of neurology. “This can be a very serious time-sensitive situation for some patients, although it can be hard to predict which patients are going to do the worst if they have to wait for an extended period of time,” he said.
Recognizing that COVID-19 presented challenges for DBS management that had not previously been considered, Dr. Okun, medical director for the Parkinson's Foundation, worked with leaders at Emory University and University of California, San Francisco to develop recommendations for device management during a pandemic, which was published in the Journal of Parkinson's Disease.
“We wanted to get information out not only to neurologists and neurosurgeons, but to general practitioners and to patients who need to understand what can and can't be done, and what can be performed through telemedicine,” Dr. Okun said.
The article addressed decision-making about implantable pulse generator battery replacement. It also outlined the risks of interrupting DBS therapy for patients with each of the conditions—Parkinson's disease, dystonia, tremor, obsessive-compulsive disorder, and epilepsy—for which the US Food & Drug Administration has approved DBS as a treatment and recommends a triage strategy to determine which patients need highest, high or moderate priority for device maintenance.
Neurologists and neurosurgeons from the three universities also published decision-making guidance for neurosurgeons in the journal, Neurosurgery.
By early May, URMC was back to normal scheduling, and Dr. Lizarraga and his colleagues were working through the backlog, prioritizing patients based on the severity of their symptoms. Lessons learned during the pandemic were leading to new processes.
“We have some people who come from quite a distance, and we are trying to address their issues over video so they can avoid the drive,” he said. “While the pandemic has reached its peak in our urban area, the rural communities are still at risk.”