September 20, 2022 – Patients navigate what can feel like an endless series of examinations and lab tests to confirm COVID long Diagnosis faces a more difficult path ahead: knowing where to go for care.
Experts say treatment options are as complex and varied as the symptoms that come with this condition. 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 patients best — their primary care provider, he says Tucci Iroko MalaysiaD., MD, founding chair and professor of family medicine at the Donald and Barbara Zucker College of Medicine at Hofstra/Northwell in Hempstead, New York.
But because of the long list of symptoms it can cause COVID longFrom exhaustion and ‘brain fog’ to SourceAnd the FeverAnd the hastyA center that brings together specialists may be the best option for patients who have access to one.
“This is a new field,” he says, “and different providers have different levels of comfort and experience in managing these symptoms.” Aaron FriedbergMD, clinical co-lead Recovery program after COVID at The Ohio State University Wexner Medical Center.
Sometimes, symptoms may affect only one or two very specific parts of the body, in which case, patients may get all the care they need by referring them to a specialist by their primary care physician – such as Earand an otolaryngologist for loss of smell and taste, or a physiatrist for muscle strain, he says.
“However, if the primary care provider is not comfortable managing this condition, or if there are multiple areas of the body affected, it may be worth seeing a post-COVID specialist,” Friedberg says.
Patients should also consider treatment at a long, specialized COVID clinic if their primary care provider refers them to people who are simply unable to help, he says. Kristen EnglundMD, Director reCOVer Clinic at Cleveland Clinicwho has been treating covid patients for a long time.
“Professionals often have their own illnesses that they treat best,” she says. Some cardiologists are experts in coronary heart disease But they may not have experience with prolonged COVID complications, and the same goes for it pulmonologists who may be experts in asthma, but again, it’s not that long ago on COVID.”
But access can be a huge problem for patients. Specialized clinics dedicated to long-term COVID care tend to be concentrated in academic medical centers in major cities and may wait for new patients for extended periods. People who live in rural areas, people with disabilities, and ethnic minorities may be less able to find specialized care. US Federal Government Administration of Community Life He has a clue He points out that finding care can be complicated.
“Finding the resources and support you need can be stressful,” she says.
But if patients can get to one, a prolonged COVID center can help when symptoms are severe or make patients less able to keep up with their usual daily routine, he says. Benjamin AbramovMD, who leads the American Academy of Physical Medicine and Rehabilitation COVID Long Collaborative Multidisciplinary.
This is also a good way to go if patients don’t see enough improvement and want second opinionsays Abramov, who is also a director Penn Medicine Clinic for Post-COVID assessment and recovery.
Today there is at least one coronavirus center in nearly every state — 48 out of 50, according to a patient advocacy group. Survivor Corps. Most of them are in major cities and are run by hospitals or healthcare 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.
Experts say that because there are no long-term guidelines or data on how well many long-term COVID treatments work, screening these specialist centers is difficult.
“The biggest challenge right now is that because this is a new field, there is no official standard of care for this condition, and there is no official accreditation body for post-COVID treatment centers,” Friedberg says.
But there are still a few things that could indicate a better – or worse – choice.
“The current best standard is to have a multidisciplinary clinic with providers who are aware of the available medical evidence and the close links between multiple disciplines, including rehabilitation, cardiology, and pulmonology, Psychiatryneuroscience, and other specialties that work together,” Friedberg says. “I 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 track record of quality care, experts say. Although there are no quality assessments specific to the long COVID, patients can learn how to rate hospitals in other key areas, such as preventing infection and surgical complications, using free tools like Medicare. Compare Hospital website.
If clinics promise results that seem too good to be true, patients should stay away from them, he says Alba Miranda AzollaD., MD, an assistant professor of physical medicine and rehabilitation and co-director of the Post-COVID-19 team at Johns Hopkins University School of Medicine.
She warns that “as more clinics pop up, some bad actors are exploiting patients with promises like miracle cures they can’t keep.” “There is very limited knowledge about the effectiveness of some of the interventions being advertised, and it pains me to see some patients being taken advantage of, paying hundreds or thousands of dollars for ‘miracle’ treatments or ‘miracle’ diagnostic tests. There is 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, he says Kathleen BellMD, a specialist in neurorehabilitation at the University of Texas Southwest O’Donnell Brain Institute who helped found COVID Recovery a 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 the complexity of COVID care.
“This is pretty much a standard procedure,” Bell says. But because this is very new and maybe confusing for some PCPs [primary care providers] Because of the numbers and the lack of clear guidelines, it is indicated to strengthen this connection.”
However, a primary care physician should be included, at least initially.
“Your primary care provider knows your medical history and is well-equipped for long-term COVID treatment in the context of your entire health,” says Iroko Males, who is also president-elect of the American Academy of Family Physicians.
Experts say 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 conducting regular checkups to monitor recovery. This could make care more accessible and affordable for patients, who do not need to travel long distances or visit distant specialists who do not take insurance.
Because protracted COVID is so new, and many interventions for the condition remain unproven, clear conversations between clinicians and patients about the potential risks and benefits of proposed treatment plans is crucial, Abramov says.
Regardless of whether patients eventually stick to a primary care provider or move to a long-term COVID center of care, they must re-evaluate their options if recovery stalls.
“One indicator of good care is that the person you see is willing to continue working with you and has the next steps in their treatment plan if their initial treatment is ineffective,” Abramov says.
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