Have Long COVID? Here’s Where to Go for Care

Sept. 20, 2022 – Patients who navigate what can really feel like an limitless collection of checkups and lab checks to substantiate an extended COVID analysis face an excellent tougher path forward: Figuring out the place to go for care.

Treatment choices are as advanced and assorted because the signs that include this situation, consultants say. And there aren’t but clear evidence-based scientific tips or greatest practices to level sufferers – or their docs – in the proper route.

The first cease ought to ideally be the one that is aware of sufferers greatest – their main care supplier, says Tochi Iroku-Malize, MD, founding chair and professor of household drugs for the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell in Hempstead, NY.

But due to the lengthy checklist of signs that may be attributable to lengthy COVID, from exhaustion and “brain fog” to chest ache, fever, and rash, a middle that brings collectively specialists could also be your best option for sufferers who can get to 1.

“This is a new field, and different providers have different levels of comfort and experience managing these symptoms,” says Aaron Friedberg, MD, scientific co-lead of the Post-COVID Recovery Program on the Ohio State University Wexner Medical Center.

Sometimes, signs might solely have an effect on one or two very particular elements of the physique, and in that case, sufferers might get all of the care they want by having their main care physician refer them to a specialist – like an ear, nostril, and throat physician for misplaced style and scent, 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 must also take into account therapy at a specialised lengthy COVID clinic if their main care supplier refers them to individuals who merely aren’t in a position to assist, says Kristin Englund, MD, director of the reCOVer Clinic at Cleveland Clinic, which treats lengthy COVID sufferers.

“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 entry generally is a massive drawback for sufferers. Specialty clinics devoted to lengthy COVID care are typically concentrated at educational medical facilities in main cities and should have lengthy waits for brand new sufferers. People residing in rural areas, folks with disabilities, and ethnic minorities might all be much less capable of finding specialised care. The U.S. federal authorities’s Administration for Community Living has a information that notes that discovering care will be sophisticated.

“Finding the resources and supports you need can be overwhelming,” it says.

But if sufferers can get to 1, an extended COVID heart will help when signs are extreme or make sufferers much less in a position to sustain with their typical each day routines, says Benjamin Abramoff, MD, who leads the American Academy of Physical Medicine and Rehabilitation’s multidisciplinary lengthy COVID collaborative.

This can be a great way to go if sufferers don’t see sufficient enchancment and desire a second opinion, says Abramoff, who can be director of the Penn Medicine Post-COVID Assessment and Recovery Clinic.

Today, there’s not less than one lengthy COVID heart in virtually each state – 48 out of fifty, in line with the affected person advocacy group Survivor Corps. Most are in main cities and run by hospital or well being care methods that work with educational medical facilities. Most of those facilities see individuals who have had signs for not less than 3 months, and lots of have months-long ready lists for brand new sufferers.

Given the shortage of tips or long-term information on how properly many lengthy COVID therapies work, vetting these specialised facilities is difficult, consultants 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 nonetheless some issues that may level to a greater – or worse – selection.

“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 doable, sufferers ought to hunt down an extended COVID clinic at an instructional medical heart or hospital with monitor file for high quality care, consultants say. Even although there aren’t but high quality rankings particular to lengthy COVID, sufferers can see how hospitals fee in different key areas, like stopping infections and surgical problems, utilizing free instruments like Medicare’s Hospital Compare web site.

If clinics promise outcomes that sound too good to be true, sufferers ought to steer clear, says Alba Miranda Azola, MD, an assistant professor in bodily drugs 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 very good clinic must also coordinate care with a affected person’s main care supplier, says Kathleen Bell, MD, a neuro-rehabilitation specialist on the University of Texas Southwestern O’Donnell Brain Institute who helped set up their COVID Recover program. While sharing medical data, therapy plans, and scientific notes is frequent, not each place does this properly – and poor coordination generally is a purple flag {that a} clinic isn’t an ideal choice, given how advanced lengthy COVID care will 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 main care physician must be included, not less than 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 additionally president-elect of the American Academy of Family Physicians.

Some sufferers might be able to get all of the therapy they want near residence, with their main care supplier coordinating any wanted referrals to specialists and doing common checkups to observe restoration, consultants say. This could make care extra accessible and reasonably priced for sufferers, who don’t have to journey lengthy distances or see faraway specialists who don’t take their insurance coverage.
Because lengthy COVID is so new, and so many interventions for the situation are nonetheless unproven, clear conversations between docs and sufferers concerning the doable dangers and advantages of proposed therapy plans are additionally essential, says Abramoff.

And no matter whether or not sufferers finally persist with a main care supplier or transition to an extended COVID heart for care, they need to reevaluate their choices if restoration 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 extra lengthy COVID sources right here.