Sept. 20, 2022 – Patients who navigate what can feel like an endless series of checkups and lab tests to confirm a long COVID diagnosis face an even harder path ahead: Figuring out where to go for care.
Treatment options are as complex and varied as the symptoms that come with this condition, experts say. And there aren’t yet clear evidence-based clinical guidelines or best practices to point patients – or their doctors – in the right direction.
The first stop should ideally be the person who knows patients best – their primary care provider, says Tochi Iroku-Malize, MD, founding chair and professor of family medicine for the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell in Hempstead, NY.
But because of the long list of symptoms that can be caused by long COVID, from exhaustion and “brain fog” to chest pain, fever, and rash, a center that brings together specialists may be the best choice for patients who can get to one.
“This is a new field, and different providers have different levels of comfort and experience managing these symptoms,” says Aaron Friedberg, MD, clinical co-lead of the Post-COVID Recovery Program at the Ohio State University Wexner Medical Center.
Sometimes, symptoms may only affect one or two very specific parts of the body, and in that case, patients may get all the care they need by having their primary care doctor refer them to a specialist – like an ear, nose, and throat doctor for lost taste and smell, or a physiatrist for muscle fatigue, he says.
“However, if a primary care provider is not as comfortable managing this condition, or if there are multiple areas of the body being affected, seeing a post-COVID specialist may be helpful,” Friedberg says.
Patients should also consider treatment at a specialized long COVID clinic if their primary care provider refers them to people who simply aren’t able to help, says Kristin Englund, MD, director of the reCOVer Clinic at Cleveland Clinic, which treats long COVID patients.
“Specialty physicians often have their own diseases that they treat best,” she says. “Some cardiologists are experts in coronary artery disease but may not have expertise in the complications of long COVID, and the same goes for pulmonologists who may be experts in asthma, but again, not long COVID.”
But access can be a big problem for patients. 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. People living in rural areas, people with disabilities, and ethnic minorities may all be less able to find specialized care. The U.S. federal government’s Administration for Community Living has a guide that notes that finding care can be complicated.
“Finding the resources and supports you need can be overwhelming,” it says.
But if patients can get to one, a long COVID center can help when symptoms are severe or make patients less able to keep up with their typical daily routines, says Benjamin Abramoff, MD, who leads the American Academy of Physical Medicine and Rehabilitation’s multidisciplinary long COVID collaborative.
This is also a good way to go if patients don’t see enough improvement and want a second opinion, says Abramoff, who is also director of the Penn Medicine Post-COVID Assessment and Recovery Clinic.
Today, there’s at least one long COVID center in almost every state – 48 out of 50, according to the patient advocacy group Survivor Corps. Most are in major cities and run by hospital or health care systems that work with academic medical centers. Most of these centers see people who have had symptoms for at least 3 months, and many have months-long waiting lists for new patients.
Given the lack of guidelines or long-term data on how well many long COVID treatments work, vetting these specialized centers is tricky, experts say.
“The biggest challenge right now is that because this is such a new field, there is not a formal standard of care for this condition, and there is no formal accrediting body for post-COVID treatment centers,” Friedberg says.
But there are still some things that can point to a better – or worse – choice.
“The current best standard is to have a multidisciplinary clinic with providers familiar with the available medical evidence and close connections between multiple specialties, including rehabilitation, cardiology, pulmonology, psychiatry, neurology, and other specialties working together,” Friedberg says. “I would recommend looking for these types of clinics as a first choice.”
When possible, patients should seek out a long COVID clinic at an academic medical center or hospital with a good track record for quality care, experts say. Even though there aren’t yet quality ratings specific to long COVID, patients can see how hospitals rate in other key areas, like preventing infections and surgical complications, using free tools like Medicare’s Hospital Compare website.
If clinics promise outcomes that sound too good to be true, patients should steer clear, says Alba Miranda Azola, MD, an assistant professor in physical medicine and rehabilitation and co-director of the Post-Acute COVID-19 Team at Johns Hopkins University School of Medicine.
“As more clinics crop up, some bad actors are preying on patients with promises like miracle cures that they can’t possibly deliver,” she warns. “There is very limited knowledge on the efficacy of certain interventions that are being advertised, and it pains me to see some patients being taken advantage of, paying hundreds or thousands of dollars for ‘miracle’ cures or ‘miracle’ diagnostic tests that truly have no strong scientific evidence to support or justify their use.”
A good clinic should also coordinate care with a patient’s primary care provider, 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. While sharing medical records, treatment plans, and clinical notes is common, not every place does this well – and poor coordination can be a red flag that a clinic isn’t a great option, given how complex long COVID care can be.
“This is pretty much standard procedure,” Bell says. “But because this is so new and probably overwhelming to some PCPs [primary care providers] because of the numbers and lack of clear guidelines, strengthening that communication is indicated.”
Nonetheless, a primary care doctor should be included, at least at first.
“Your primary care provider knows your medical history and is well-equipped to treat long COVID within the context of your whole health,” says Iroku-Malize, who’s also president-elect of the American Academy of Family Physicians.
Some patients may be able to get all the treatment they need close to home, with their primary care provider coordinating any needed referrals to specialists and doing regular checkups to monitor recovery, experts say. This can make care more accessible and affordable for patients, who don’t need to travel long distances or see faraway specialists who don’t take their insurance.
Because long COVID is so new, and so many interventions for the condition are still unproven, clear conversations between doctors and patients about the possible risks and benefits of proposed treatment plans are also crucial, says Abramoff.
And regardless of whether patients ultimately stick with a primary care provider or transition to a long COVID center for care, they should reevaluate their options if recovery stalls.
“One indication of good care is that the person you’re seeing is willing to continue to work with you and has next steps in the treatment plan if their initial treatment is ineffective,” Abramoff says.
Find more long COVID resources here.