Sept. 20, 2022 – Patients who navigate what can feel like an endless series of checkups and lab tests to confirm a COVID for longThe next step is to determine where to get care.
Experts agree that the treatment options available are just as varied and complex as the symptoms. 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 MalizeDr. Robert A. Smith, MD, founder chair and professor of family medicine at Hofstra/Northwell in Hempstead NY.
The long list of symptoms can be caused by this drug. COVID long, from exhaustion and “brain fog” to chest pain, Fièvre?, and RashesPatients who are able and able to access specialists may choose a center that brings together them all.
“This is a new field, and different providers have different levels of comfort and experience managing these symptoms,” says Aaron FriedbergMD, Clinical Co-Lead of The Post-COVID Recovery ProgramAt 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 An earHe is a doctor of the nose and throat for loss of taste and smell and a physiatrist to treat muscle fatigue.
“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 EnglundMD, Director of The reCOVer Clinic, Cleveland ClinicThis is a treatment for COVID patients who have been long-term.
“Specialty physicians often have their own diseases that they treat best,” she says. “Some cardiologists are experts in Coronary artery diseaseHowever, they may not be familiar with the complexities of long COVID. Pulmonologists who may be experts in asthma, but again, not long COVID.”
Access can be a problem for patients. Patients may not have immediate access to specialist COVID care. These clinics are often located at major universities and may have long waiting lists. It is possible that people living in rural areas, persons with disabilities, and members of minorities will have difficulty finding specialized treatment. The U.S. federal government’s Administration for Community Living This guide is for informational purposes only.This article notes that it can be difficult to find care.
“Finding the resources and supports you need can be overwhelming,” it says.
However, patients who are able to access one can benefit from a long COVID centre. This can be helpful when patients have severe symptoms or are unable to continue with their daily lives. Benjamin Abramoff, MD, who leads the American Academy of Physical Medicine and Rehabilitation’s Collaborative multidisciplinary COVID collaboration.
This is also a good way to go if patients don’t see enough improvement and want a Second opinionAbramoff, who also serves as director of The Abramoff Foundation, said, Penn Medicine Post-COVID Assessment & 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. Many are located in major cities, and run by hospitals or health care system that collaborate with academic medical centres. Many of these centers only accept patients who have been experiencing symptoms for at least three months. There are also long waiting lists that can take months to receive new patients.
Experts warn that it can be difficult to evaluate these specialized centers due to the lack of long-term data or guidelines on long-term COVID treatments.
“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.”
Experts recommend that patients seek out long COVID clinics at academic medical centers or hospitals with a track record of quality care. 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.
Patients should stay away from clinics promising results that seem too good to true. Alba Miranda AzolaDr., MD, is an assistant professor of physical medicine and rehabilitation, and co-director of Johns Hopkins University School of Medicine’s Post-Acute COVID-19 team.
“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.”
However, it is important to include a primary doctor at the very least.
“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.
Experts say that some patients might be able get the care they need right at home. Their primary care provider will coordinate any referrals to specialists and do regular checks to monitor recovery. 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.
Abramoff states that COVID long is still relatively new and many treatment options for the condition are still unknown. This makes it crucial that doctors and patients have clear discussions about the risks and benefits of any proposed treatment plans.
Patients should reconsider their options, regardless of whether they choose to stay with the same primary care provider or move to a long-term COVID center for care.
“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.
See more COVID resources for long-term useHere.
