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Sept. 2, 2022 – Many patients dealing with debilitating long COVID symptoms that interfere with their day-to-day lives might be tempted to go straight to a specialist – whether it’s a pulmonologist for breathing difficulties or a physiatrist for muscle fatigue – to see if they have long COVID. But medical experts – including many specialists who treat the most complex long COVID cases – recommend starting in a different place: primary care.
“Their primary care physicians are often most knowledgeable about the patients’ complete medical history, and that context is important in the process of diagnosing someone with long COVID,” says Benjamin Abramoff, MD, who leads the long COVID collaborative for the American Academy of Physical Medicine and Rehabilitation.
Primary care providers have been on the front lines of diagnosing long COVID since the early months of the pandemic, when it became clear that a large number of patients had lingering symptoms many weeks after their original COVID-19 infections cleared up.
One early guide for diagnosing long COVID in primary care, published in The BMJ in August 2020, estimated that 1 in 10 patients had a long illness after COVID infections. That estimate now looks low. A July 2022 report from the CDC found 1 in 5 people infected by the virus currently have long COVID symptoms.
Diagnosing long COVID has been a challenge because there’s no simple way to screen for the condition, and no single set of symptoms that definitively lead to the right diagnosis. Primary care providers, who often do detective work to sort out what conditions might explain patients’ health complaints, are well positioned to cast a wide net in exploring possible reasons for the complex mix of symptoms that is par for the course with long COVID.
Symptoms of long COVID Include fatigue, a cough that won’t go away, shortness of breath, lack of smell or taste, a hard time focusing, insomnia, sexual dysfunction, chest pain, and dizziness, among others, says Kristin Englund, MD, director of the Cleveland Clinic reCOVer Clinic, which treats long COVID patients.
Given how complex this is, there are many good reasons to seek a diagnosis in primary care, experts say.
Easier access to care is one big reason. Primary care providers tend to be closer to the patient’s home, and many set aside time to see sick patients quickly. Specialty clinics dedicated to long COVID care tend to be concentrated at academic medical centers in major cities and may have long waits for new patients. The sooner patients are seen, the sooner they may start getting care for symptoms that are interfering with their daily lives.
A primary care doctor who knows the patient well may be able to better distinguish symptoms unique to the COVID infection from old health problems that are resurfacing.
“Working with a primary care provider can avoid unwarranted and expensive diagnostic testing initially,” says Kathleen Bell, MD, a neuro-rehabilitation specialist at the University of Texas Southwestern O’Donnell Brain Institute who helped establish their COVID Recover program. “Patients should always start exploring questions of health care with their primary care physicians.”
Even if many experts agree that primary care is the best place to go for a long COVID diagnosis, they also agree that the process is imperfect and that not all of these doctors are up to the task. There aren’t yet evidence-based guidelines for diagnosing long COVID. And sometimes this diagnosis can get overlooked in primary care, especially when symptoms closely resemble those of other chronic health problems that have become more common during the pandemic – like depression, burnout, and chronic fatigue.
When patients show up with too many unexplained symptoms, primary care providers may also opt to refer patients to local specialists who can explore each issue separately, says Alba Miranda Azola, MD, co-director of the Post-Acute COVID-19 Team at Johns Hopkins University School of Medicine.
“What ends up happening in reality sometimes is patients see their primary care provider, they come in, they have 15 minutes, and they are ranting about all of these symptoms that are multisystemic,” she says. “The primary care provider doesn’t have time to deal with all of these symptoms – it’s gastroenterology and cardiology and neurology – and they refer to all of these different specialists.”
While referrals often help get patients diagnosed properly, it doesn’t always work because not all of these specialists are experienced with diagnosing long COVID, Azola says. “They see the cardiologist who says all of the tests are fine and I can’t help you, then it’s the same with all the different specialists.”
Patients who suspect long COVID, but don’t get this diagnosis despite persistent symptoms, may want to go to a specialized long COVID clinic for a second opinion, says Monica Verduzco-Gutierrez, MD, chair of rehabilitation medicine and director of the COVID-19 Recovery Clinic at the University of Texas Health Science Center at San Antonio.
“If the primary care provider has limited knowledge on the topic or limited options for treatments, or in the case where patients may become more chronic and have multiple conditions and symptoms to manage, this is where a multi-disciplinary long COVID clinic would be an excellent option,” she says.
Long COVID can be diagnosed when patients have persistent symptoms at 4 four weeks after infections start, according to the CDC. Many specialized long COVID clinics focus on more severe, complex cases and won’t see patients unless their symptoms don’t clear up for at least 3 months.
This makes sense, since many long COVID patients can be effectively diagnosed and treated in primary care, says, Tochi Iroku-Malize, MD, founding chair and professor of family medicine for the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell. And primary care remains the best place for patients to go whenever they have concerning, unexplained symptoms – whether it’s long COVID or not.
“As the health care community continues to learn more about long COVID, it’s important to start with a health care professional you know and trust – your primary care physician,” she says.