Tracking and treating when there aren’t enough tests: Lessons learned from South Boston
“Doctora, the sound of your voice has been the best medicine for me”.
When what turned out to be our first case of COVD-19 walked through the doors of our community health center, we had the first of what would be hundreds of the same conversation. “It sounds like you could have COVID-19, I’m really sorry you don’t qualify for testing.”
With a national shortage of tests, only those who met stringent criteria - those most likely to be positive - could be tested. The rest - the vast majority of likely COVID cases - remained in limbo. "But what if I have it? My mom has COPD. Can I even go home?" "I drive a bus. Do you know how many people could get sick if I have it?" With limited knowledge of how the disease spread and minimal access to PPE, we had many of these conversations on our cell phones, to patients on the other side of a closed exam room door.
Patients were terrified, and we were frustrated with what felt like our inability to help. Our providers – experienced in diagnosing and treating complex conditions at the frontlines of care – recognized many potential cases of COVID-19, but lacked the testing that could trigger the contact testing and tracing necessary to mitigate and successfully suppress this pandemic.
But even in the absence of well-studied information about the disease, or access to reliable testing, primary health care has one great advantage: relationships with our patients and communities. In the U.S., community health centers – community member-led primary care facilities with a mandate to care for all regardless of ability to pay – are built for this. We know how to care for our patients, even without much public information on how to care for this disease.
We took our team-based model of care and put our nurses front and center. Every time a patient contacts the health center with a question about COVID or an acute illness, our nurses use a standardized note template to document their symptoms, onset, and exposures. The nurses then have several options- for otherwise healthy patients with mild symptoms, they give advice over the phone (or schedule a walk-up test, now that they are available). If the patient is medically complicated or symptoms are more severe, they book the patient for a telehealth visit (with their PCP or the designated triage provider for the day) or an in-person visit to our Influenza-like Illness clinic. The telehealth provider can also ask the patient to come to an office visit if needed, or rarely, can refer directly to the emergency room.
We rapidly learned that “influenza-like-illness” clinic, where a single provider sits in a single set of PPE for their shift, is a misnomer – many patients had a variety of complaints that went far beyond the routine “influenza-like” symptoms. Patients who were later proven to have COVID-19 were first diagnosed with strep throat, viral gastroenteritis, allergies, a migraine, or a cold. And as time passed we weren’t just seeing patients who were acutely ill – patients with COVID-19 needed other care too. Diabetics with mild symptoms need someone to analyze their glucometer readings and adjust their medications. Pregnant women need their routine prenatal care. One patient presumed COVID-19 positive felt well enough to be rearranging furniture and needed someone to suture the resulting laceration.
Our first few cases taught us hard lessons. Among the few people who got tested, some had COVID who we never would have suspected. People who didn't qualify for testing passed it on to their family members when they didn't meet the federal or state criteria for who needed to isolate or quarantine. These guidelines were designed to ration the existing testing and infrastructure as efficiently as possible, but they were not designed to care for individual patients and their families. Quality care meant taking a more patient-centered approach – one we try to take every day. So regardless of whether or not they are a reportable case, every patient with possible COVID-19 symptoms is told to self-isolate and added to our internal list of active patients. With sufficient additional support, this list could be used for expanded contact tracing beyond “test-positive” cases, and we could recommend isolation to all the other members of our community who need it.
Using an algorithm developed in conjunction with our affiliated hospital, Boston Medical Center, every suspected case is called by a nurse every 1-2 days based on the severity of their symptoms and medical complexity. The nurses use the same standardized flowsheet to track symptom progression with each call, and can continue to refer to any of the triage choices above, with primary care providers (PCPs) reviewing the responses each day. Patients stay on the list until they meet the CDC criteria to be cleared from isolation precautions, even if they were never tested, or tested negative but continued to have clinical suspicion for illness. Patients experiencing long recoveries from prolonged fatigue or other complications after the initial illness resolves are transitioned back to PCP care by phone, or visits in our routine clinic when needed.
We repurposed most of our nursing staff and our nurse case managers to make the calls. At the peak, we were making more than 150 phone calls per day, with PCPs assigned to make calls too. In the past 14 weeks we've followed almost 1,000 patients - our clinic cares for about 16,000 patients each year, but many of those we’ve followed are new to our clinic, having been out of care or after discovering their usual practice has shut down for lack of personal protective equipment (PPE)or funding. This patient-centric system, though labor intensive, allows us to continue to provide the care our patients need, while also leveraging our relationships with our community to affect their health on a larger scale.
First, we can help mitigate the spread of COVID-19 in our community. We are constantly reinforcing isolation precautions with even the presumed or possible cases. We are problem-solving the living conditions that make isolation or quarantine impossible: problems we are often already intimately familiar with. For instance, how do you isolate a single mom of a toddler? How do you tell someone they can't leave their house for two weeks when there is only enough money to buy food for a few days? We talk about harm reduction, hand washing, masks, and cleaning the bathroom. Our social workers drop off food from the food pantry. Sometimes we help think through the lesser of two evils – should you potentially expose a grandparent as an additional caregiver in order to separate a chronically ill child from a sick sibling? Or risk the immunocompromised child becoming ill with COVID-19 in order to continue to protect and physically isolate the grandmother? We help people who are presumed positive, but never got tested, to navigate the complicated and ever-changing CDC recommendations so they know when they may safely re-enter their communities. We talk to their employers to try to keep them out of work until they are well.
Second, we also get patients to hospitals who need to be there. When we reviewed our first 50 positive cases, every single hospital admission was sent to the emergency department by us. Not one patient decompensated silently at home. They were mostly referred by phone, and almost always for rapid breathing. One patient, reporting only mild symptoms but noted by the nurse to be speaking in only 2-3 word sentences, arrived in the emergency department requiring 8 liters of oxygen.
Finally, we can decompress the emergency department by keeping away those who don’t need to be there. Anxious patients can be reassured or monitored by a source they trust, and thus don’t walk into hospitals demanding testing they don’t have or care they don’t need. Our robust triage system limits in-person visits to those who really need them, limiting both possible exposures and PPE use. The vast majority of the patients we do see in person are treated on-site and sent home.
There has been a huge focus on ramping up hospital and ICU capacity to cope with COVID-19. And this is needed. More reliable testing, more test kits, more PPE - we need them all. But when patients need care now, they turn to the people they know and trust – their primary health care team. We are the system that was built to take care of them, leveraging our knowledge of our patients and communities to adapt to their new realities. Comprehensive primary health care can do so much when it is sufficiently supported – from continuing to provide essential health care to actively fighting pandemics, including the diagnosis, tracking and tracing of suspected cases, and community-based management for the large proportion of cases who can be safely treated at home. As one patient put it, “Doctora, the sound of your voice has been the best medicine for me.”