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Treating the long-term effects of COVID-19
Northwell's COVID Ambulatory Resource Support (CARES) program employs a unique model to treat long-COVID symptoms
After recovering from COVID-19, many patients got cheers from hospital staff or warm embraces from loved ones. But for some, the battle wasn’t over. Marking the transition into recovery has proven difficult for many patients with COVID. Symptoms such as loss of smell, “brain fog” and severe fatigue have persisted for weeks and even months.
We refer to the persistence of symptoms as “long COVID” or by the scientific term, post-acute sequelae of SARS-CoV-2 (PASC). You may’ve seen reference to “long haulers” as a term for these patients. But, this gives patients and their families the sense that this is going to be forever reaching, or continue for the foreseeable future. This is not aligned with patient-centered, compassionate care. The terms we use are important and at Northwell Health we feel it’s more compassionate to name the condition as opposed to the person suffering from it. We want patients and caregivers to feel supported, to expect gradual improvement, and to know that their condition doesn’t define them. We want to maintain hope for the survivors of COVID-19.
In the last year we have treated more than 4,000 patients and conducted more than 8,000 visits through the COVID Ambulatory Recovery Support (CARES) program at Northwell Health – many suffering still from these lingering symptoms. Knowing this virus can affect the entire body, we created this hub to connect patients who did not require intensive care to a high-level of treatment for every organ, every system, every need on their journey of COVID-19 or PASC.
A unique model
CARES mimics the range of experts and services a patient would be able to access in a hospital setting, without having to go to one. Rather than establish a single location like many clinics across the country, the CARES team does the legwork for the patient recovering at home. Our Northwell NetworkCare team assesses the patient’s needs, identifies the level of care required to address them, and helps coordinate the appointments – making sure that any in-person visits are close to home. This is especially important, given Northwell’s large footprint.
Recognizing the need for a long-COVID clinic
Throughout the pandemic, more than 200,000 COVID-19 patients have been treated across the health system, including 120,000 who were treated in our outpatient facilities.
In the pandemic’s first days, some doctors moved to hospital intensive care units (ICU) while others, such as myself, continued to field calls in our outpatient practices. We saw huge numbers of patients. Many came from people struggling to breathe, yet refusing an ambulance for fear of what awaited them in a hospital.
I remember one night in March 2020 receiving more than 50 calls in the span of 12 hours; all from COVID-19 patients; all in need of assistance – some needing the basics like a thermometer. I would ask, "Is there anybody around you? Can you have them touch your forehead to see if you have a fever?"
Pulse oximeters became another tool that would help us determine if someone’s symptoms were mild or severe and what level of care was appropriate. But, most patients did not have one in the home. Even before we established CARES, Northwell’s Home Care team, led by Irina Mitzner began sending nurses out to those homes with the simple device to measure oxygen levels. And, Northwell’s comprehensive Coronavirus Related Outpatient Work Navigators (CROWN) program, founded by Gita Lisker, MD, began treating those in need with oxygen and labs at home.
Throughout this crisis, team members continually took responsibility for the health and wellbeing of our patients. The attitude was, “Let’s make sure these patients get the resources they need. How can I help?”
As those patients recovered, we realized a portion were having persistent symptoms, and there was no established system for follow-up care, which is why we created the CARES program.
For those with moderate-to-severe symptoms, underlying health conditions or other high-risk features, CARES connects patients to the CROWN program, which offers intensive monitoring and treatment (where appropriate) available at home for patients with COVID-19. The team of pulmonologists, home care nurses, laboratory services, and navigators work seamlessly to provide a wide range of services.
Personally, I find the CROWN program remarkable because the team has been able to replicate many services provided to a patient in the hospital, but at home. Those services may include:
- Checking vitals
- Supplemental oxygen
- IV hydration and/or medications
- Performing an X-ray with a portable machine
- Administering COVID-specific blood tests
CROWN may refer a patient who does not have a primary care doctor or needs further follow-up to the CARES team.
Treating COVID-19 in and out of the hospital
Another example of collaboration is the services that Northwell Health Solutions provides for patients. For patients and clinicians, they have made access to antibody infusion treatments for COVID seamless. They monitor patients who are being discharged from Northwell hospitals after having COVID and ensuring they have access to wrap-around services, including the CARES program. Addressing the needs of patients being transitioned from the hospital or emergency room to home is a critical aspect of collaboration between multiple services.
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Long-COVID symptoms
For the growing number of PASC patients, symptoms range widely in severity, persistence and the effect on daily life. For many, it has been alarming, confusing and even debilitating. But, recovery is possible.
While fatigue seems to be the most common, other symptoms include headache, chest pain, muscle aches, joint aches, loss of smell, loss of taste and lightheadedness, just to name a few. There remains no way to determine who will have post-COVID symptoms, but based on what we have observed during the last year, patients tend to fall into one of three main categories:
- Pulmonary: shortness of breath resulting from pneumonia and pneumonitis; an inability to sleep laying down; persistent need for oxygen therapy; and insomnia
- Cardiac: heart disease, including myocarditis and pericarditis
- Neurocognitive and physical deconditioning: brain fog or cognitive impairment; depression and anxiety; muscular weakness; gait instability; profound debilitating fatigue
The journey to understand screening and treating symptoms like brain fog has been evolving. While we have some understanding of early patterns of PASC, much remains unknown. Northwell continues to conduct research – and at a record pace. With limited data and evidence on therapies that are effective, research is critical to help further efforts in our understanding.
Collaboration among multidisciplinary teams is essential to effectively operate outpatient COVID clinics and treating the long-term effects of COVID-19. Some studies show these lingering symptoms last an average of three-to-six months. Many factors can play into this.
- Severity of COVID infection: Patients with mild-to-no symptoms during acute infection with COVID-19 can develop PASC. However, studies have shown a strong association between the severity and persistence of PASC symptoms with patients who were hospitalized and required oxygen support. The worse the initial infection, the worse the PASC. This further highlights the importance of getting the COVID vaccine, which has been shown to reduce severity of acute symptoms.
- Sleep and nutrition: there's a very direct correlation between sleep quality and recovery when it comes to cardiac or pulmonary disease, which is not unique to COVID-19. In the case of PASC patients, insomnia is typically one of the last symptoms to recover, which presents a challenge. Patients with mild symptoms should try their best to maintain nutritious diet and good sleep practices during and after COVID-19 infection.
- Early intervention: The number one recommendation is physical therapy (PT) and rehabilitation. Early mobilization of intensive care patients has proven beneficial in Northwell’s experience and studies published globally. Our team of physiatrists and therapists have found it helpful in the outpatient population, too. The sooner patients access these therapies the sooner it may help them start the recovery process.
- COVID vaccination: Reducing risk of COVID-19 infection will reduce the risk of more severe and persistent symptoms of PASC. With more infectious variants currently circulating, we strongly encourage everyone to get vaccinated to reduce their risk of severe illness from the COVID-19 infection.
Our hope is that, as more people get vaccinated, these post-COVID symptoms will be more likely to be mild and, eventually, programs like ours will not be needed.
As we experience yet another wave, we need continued collaboration especially with the community we serve. We need every eligible person to be vaccinated against COVID-19.
If you are experiencing lingering symptoms from COVID-19, we are here to help. And it starts with a simple phone call to (855) 569-4227.
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