Do you have long COVID? Here’s where you can go for care

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Sept. 20, 2022 — Patients navigating a seemingly endless series of exams and lab tests to confirm a long-standing COVID diagnosis face an even more difficult path: figuring out where to seek treatment.

According to experts, the treatment options are as complex and varied as the symptoms associated with this disease. 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 point of contact should ideally be the person who knows the patient best – their GP, says Dr. Tochi Iroku-Malize, Founding Chair and Professor of Family Medicine at 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 a 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 heading to one can reach .

“This is an emerging field, and different providers have different levels of comfort and experience in managing these symptoms,” said Aaron Friedberg, MD, co-clinical director of the Post-COVID Recovery Program at Ohio State University’s Wexner Medical Center.

Sometimes the symptoms can only affect one or two very specific parts of the body, in which case patients may be able to get all the care they need if they are referred by their GP to a specialist – such as an ear, nose and throat specialist for lost taste and smell, or a physiatrist for muscle fatigue, he says.

“However, if a GP isn’t as comfortable managing this condition, or if multiple areas of the body are affected, it can be helpful to see a post-COVID specialist,” says Friedberg.
Patients should also consider treatment at a specialized long COVID clinic if their GP is referring them to people who just can’t help, says Dr. Kristin Englund, director of the reCOVer clinic at the Cleveland Clinic, which has long been treating COVID patients.

“Specialists often have their own diseases that they treat best,” she says. “Some cardiologists are experts in coronary artery disease but may not have experience with the complications of long COVID, and the same is true for pulmonologists who may be experts in asthma but, again, not long COVID.”

But access can be a major problem for patients. Specialty clinics dedicated to long-term COVID care are usually concentrated in academic medical centers in major cities and may face long waits for new patients. People living in rural areas, people with disabilities and ethnic minorities may be less able to access specialized care. The US federal government’s Administration for Community Living has guidance that suggests that finding care can be complicated.

“Finding the resources and support 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 patients are less able to keep up with their typical daily routines, says Benjamin Abramoff, MD, who leads the American Academy of Physical Medicine and Rehabilitation cooperatively manages COVID.

It’s also a good way to go when patients aren’t seeing enough improvement and want a second opinion, says Abramoff, who is also the director of the Penn Medicine Post-COVID Assessment and Recovery Clinic.

Today, almost every state has at least one long COVID center — 48 out of 50, according to patient advocacy Survivor Corps. Most are located in major cities and run by hospitals or healthcare systems that work in partnership with academic medical centers. Most of these centers see people who have had symptoms for at least 3 months, and many have month-long waiting lists for new patients.

Reviewing these specialized centers is difficult given the lack of guidelines or long-term data on how well many long-term COVID treatments are working, experts say.

“The biggest challenge right now is that there is no formal standard of care for this condition because it is such a new field, and there is no formal accreditation body 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 who are familiar with the available medical knowledge and strong connections between multiple specialties, including rehabilitation, cardiology, pulmonology, psychiatry, neurology and other specialties working together,” says Friedberg. “I would recommend looking for clinics like this as a first choice.”

If possible, patients should seek long-term COVID clinic at an academic medical center or hospital with a good track record of providing quality care, experts say. While there aren’t specific long-COVID quality ratings yet, patients can use free tools like Medicare’s Hospital Comparison website to see how hospitals are performing in other key areas, such as: B. the prevention of infections and surgical complications.

When clinics are promising results that sound too good to be true, patients should steer clear, says Alba Miranda Azola, MD, assistant professor of physical medicine and rehabilitation and co-director of the Post-Acute COVID-19 team at the Johns Hopkins University School of Medicine.

“As more clinics pop up, some bad actors prey on patients with promises like miracle cures that they can’t possibly keep,” she warns. “There is very limited knowledge about the effectiveness of certain advertised interventions, and it pains me to see some patients being taken advantage of and paying hundreds or thousands of dollars for ‘miracle’ cures or ‘miracle’ diagnostic tests that really don’t have any strong ones scientific evidence to support or justify their use.”

A good clinic should also coordinate care with a patient’s primary care physician, says Kathleen Bell, MD, a neurorehabilitation specialist at the University of Texas’ Southwestern O’Donnell Brain Institute who helped establish her COVID-Recover program. While sharing medical records, treatment plans, and clinical notes is common, not every place works as well — and poor coordination can be a red flag that a clinic isn’t a good option given the complexity of long COVID care can be.

“It’s pretty much standard practice,” says Bell. “But because this is so new and probably overwhelming for some PCPs [primary care providers] Given the numbers and the lack of clear guidelines, this communication needs to be strengthened.”

Nevertheless, a family doctor should be consulted, at least initially.

“Your GP knows your medical history and is well-equipped to treat long-term COVID in the context of your overall health,” says Iroku-Malize, who is also the 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 GP coordinating any necessary referrals to specialists and conducting regular checkups to monitor recovery, experts say. This can make care more accessible and affordable for patients who don’t have to travel long distances or visit distant specialists who don’t have insurance.
Because COVID is so new for so long, and so many interventions for the condition remain unproven, clear discussions between physicians and patients about the potential risks and benefits of proposed treatment plans are also critical, Abramoff says.

And whether patients ultimately stay with a primary care physician or transfer to a long COVID care center, they should reevaluate their options when recovery falters.

“An indication of good care is that the person you’re seeing is willing to continue working with you and has next steps in the treatment plan if their initial treatment is ineffective,” says Abramoff.

Find more long COVID resources here.


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Do you have long COVID?  Here’s where you can go for care
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