September 20, 2022 – Patients navigating what can feel like an endless series of checkups and lab tests to confirm a long COVID faced with an even more difficult path: knowing where to go for treatment.
The treatment options are as complex and varied as the symptoms that accompany this condition, experts say. And there are still no 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 the patients best — their primary care provider, says Tochi Iroku-MalizeMD, founding president and professor of family medicine at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell in Hempstead, NY.
But due to the long list of symptoms that can be caused by long COVIDfrom exhaustion and “brain fog” to chest pain, feverand eruptiona center with specialists may be the best choice for patients who can travel there.
“This is a new area, and different providers have different levels of comfort and experience managing these symptoms,” says Aaron FriedbergMD, clinical co-lead of the Post-COVID recovery program at Ohio State University Wexner Medical Center.
Sometimes symptoms may only affect one or two very specific parts of the body, and in this case patients can get all the care they need by asking their primary care doctor for a specialist referral – like a earnose and throat doctor for loss of taste and smell, or physiatrist for muscle fatigue, he says.
“However, if a primary care provider is not as comfortable managing this condition, or if multiple areas of the body are affected, it may be helpful to see a post-COVID specialist,” says Friedberg.
Patients should also consider treatment at a specialized long-term COVID clinic if their primary care provider refers them to people who simply aren’t able to help, says Kristin EnglundMD, Director of reCOVer Clinic at Cleveland Clinicwho treats long COVID patients.
“Specialist doctors often have their own illnesses 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 asthma experts, but again, not long COVID.
But access can be a big problem for patients. Specialty clinics dedicated to long-term COVID care tend to be concentrated in academic medical centers in major cities and can have long waits for new patients. People living in rural areas, people with disabilities and ethnic minorities may all be less able to find specialist care. U.S. Federal Government Community Life Administration has a guide who notes that finding care can be complicated.
“Finding the resources and supports you need can be overwhelming,” he says.
But if patients can get there, a long COVID center can help when symptoms are severe or make patients less able to follow their typical daily routines, says Benjamin AbraoffMD, who directs the American Academy of Physical Medicine and Rehabilitation’s multidisciplinary long collaborative COVID.
It’s also a good way to go if patients don’t see enough improvement and want a second opinionsays Abramoff, who is also director of the Penn Medicine Post-COVID Assessment and Recovery Clinic.
Today there is at least one long COVID center in almost every state – 48 out of 50, according to the patient advocacy group Corps of survivors. Most are in major cities and run by hospitals 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 the effectiveness of many long-lasting COVID treatments, verifying these specialist centers is tricky, experts say.
“The biggest challenge right now is that because it’s such a new field, there’s no formal standard of care for this condition, and there’s no body formal accreditation for post-COVID treatment centers,” says Friedberg.
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 strong links between multiple specialties including rehabilitation, cardiology, pulmonology, psychiatry, neurology and other specialties working together,” says Friedberg. “I would recommend looking for these types of clinics as your first choice.”
When possible, patients should seek out a lengthy COVID clinic at an academic medical center or hospital with a good track record of quality care, experts say. While there are no long-COVID-specific quality ratings yet, patients can see how hospitals rate in other key areas, like preventing infection and surgical complications, using free tools. like Medicare. Hospital comparison website.
If clinics promise results that sound too good to be true, patients should stay away, says Alba Miranda AzolaMD, Assistant Professor of Physical Medicine and Rehabilitation and Co-Director of the Post-Acute COVID-19 Team at Johns Hopkins University School of Medicine.
“As more clinics spring up, some bad actors prey on patients with promises like miracle cures that they can’t deliver,” she warns. “Knowledge about the effectiveness of some advertised interventions is very limited, and it pains me to see some patients profiting, paying hundreds or thousands of dollars for ‘miracle’ cures or ‘miracle’ diagnostic tests that have really no solid scientific evidence to support or justify their use.
A good clinic should also coordinate care with the patient’s primary care provider, says Catherine BellMD, a neurorehabilitation specialist at the Southwestern O’Donnell Brain Institute at the University of Texas, who helped establish their COVID Recover program. While sharing medical records, treatment plans, and clinical notes is common, not all places do it well — and poor coordination can be a red flag that a clinic isn’t great. option, given the complexity of COVID care.
“That’s pretty much standard procedure,” Bell says. “But because it’s so new and probably overwhelming for some PCP [primary care providers] due to the number and lack of clear guidelines, it is appropriate to strengthen this communication. »
Nevertheless, a primary care physician should be included, at least initially.
“Your primary care provider knows your medical history and is well equipped to deal with long COVID in the context of your overall health,” says Iroku-Malize, who is 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 necessary referrals to specialists and performing 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 distant specialists who don’t take their Insurance.
Because long COVID is so new and many interventions for the disease are still unproven, clear conversations between doctors and patients about the possible risks and benefits of proposed treatment plans are also crucial, Abramoff says.
And whether patients ultimately stay with a primary care provider or move to a long COVID care center, they need to reevaluate their options if recovery stalls.
“An indication of good care is that the person you see is willing to continue working with you and has next steps in the treatment plan if their initial treatment is ineffective,” Abramoff says.
Find longer COVID resources here.