Finding a place to receive care is a challenge for patients who undergo what may seem like an endless sequence of exams and lab testing to confirm a lengthy COVID diagnosis.
According to doctors, there are a wide range of difficult treatment options available to address this condition’s symptoms. Additionally, there aren’t any well-defined, evidence-based clinical best practises or guidelines to help patients or their doctors in the proper direction.
According to Tochi Iroku-Malize, MD, founding chair and professor of family medicine for the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell in Hempstead, New York, the primary care provider should ideally be the first port of call because they are the ones who know patients best.
However, for patients who can go to one, a centre that brings together specialists may be the best option due to the extensive array of symptoms that can be brought on by extended COVID, from weariness and “brain fog” to chest pain, fever, and rash.
According to Aaron Friedberg, MD, clinical co-lead of the Post-COVID Recovery Program at the Ohio State University Wexner Medical Center, “this is a new profession, and different doctors have different levels of comfort and experience addressing these symptoms.”
Patients may receive all the care they require when their primary care physician refers them to a specialist, such as an ear, nose, and throat doctor for lost taste and smell or a physiatrist for muscle fatigue, when symptoms only affect one or two very specific parts of the body, according to the expert.
However, consulting a post-COVID specialist may be beneficial if a primary care practitioner is not as experienced in treating this illness or if various body parts are impacted, according to Friedberg. According to Kristin Englund, MD, director of the Cleveland Clinic’s reCOVer Clinic, which treats patients with long COVID, patients should also take into account receiving treatment at a specialised long COVID clinic if their primary care provider refers them to individuals who are unable to assist.
She claims that specialists frequently cure their own conditions best. In the same way that some pulmonologists may be experts in asthma but not long COVID, some cardiologists may be experts in coronary artery disease but not necessarily the consequences of long COVID.
But for patients, access can be a major issue. Academic medical centres in major cities tend to be the concentration of specialty clinics for long COVID care, and there may be lengthy wait times for new patients. Ethnic minorities, those with impairments, and people who live in remote locations can all have more difficulty locating specialist care. Finding care can be challenging, according to a guide from the Administration for Community Living of the U.S. federal government.
Finding the tools and assistance you require can be intimidating, it states.
But if patients can reach one, a long COVID centre can help when symptoms are severe or make patients less able to maintain their usual daily routines, according to Benjamin Abramoff, MD, who is in charge of the multidisciplinary long COVID collaborative of the American Academy of Physical Medicine and Rehabilitation.
According to Abramoff, who is also the director of the Penn Medicine Post-COVID Assessment and Recovery Clinic, this is also an useful course of action if patients don’t feel like they’ve improved enough and want a second opinion.
48 out of 50 states currently have at least one extended COVID centre, according to the patient advocacy organisation Survivor Corps. The majority are located in large cities and are managed by hospital or healthcare networks that collaborate with university medical institutes. Many of these facilities have months-long waiting lists for new patients, and the majority of patients there have symptoms for at least three months.
It can be difficult to evaluate these specialist institutions because there are no standards or long-term data on how well various lengthy COVID treatments perform, according to experts.
The main issue at this time, according to Friedberg, is that there is no recognised standard of care for this disorder and no formal organisation that accredits post-COVID treatment facilities. This is because the subject is so young.
However, some factors can still indicate a better – or worse – decision.
“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” is the current gold standard, according to Friedberg. “I would suggest making these clinics your top pick while searching.”
Patients should, if at all possible, look for a lengthy COVID clinic at an academic medical centre or hospital with a solid reputation for providing high-quality care. Although there aren’t any quality ratings for long COVID just yet, people can still use free resources like Medicare’s Hospital Compare website to examine how hospitals perform in other crucial areas like reducing infections and surgical complications.
According to Alba Miranda Azola, MD, assistant professor of physical medicine and rehabilitation at Johns Hopkins University School of Medicine and co-director of the Post-Acute COVID-19 Team, patients should avoid any clinics that make outcomes that seem too good to be true.
She cautions that as more clinics spring up, some dishonest people are taking advantage of patients by promising them impossible miracle cures. It pains me to see some patients being taken advantage of by paying hundreds or thousands of dollars for’miracle’ cures or’miracle’ diagnostic tests that actually have no strong scientific evidence to support or justify their use. There is very little knowledge about the efficacy of certain interventions that are being advertised.
According to Kathleen Bell, MD, a neuro-rehabilitation specialist at the University of Texas Southwestern O’Donnell Brain Institute who assisted in the development of their COVID Recover programme, an effective clinic should also coordinate care with a patient’s primary care physician. While sharing medical information, treatment plans, and clinical notes is widespread, not all locations do this well. Given how complicated long-term COVID care may be, poor coordination can be a sign that a clinic isn’t a good option.
Bell claims that “this is very much typical technique.” “But improving that communication is indicated because this is so new and possibly daunting to some PCPs [primary care doctors] because of the numbers and lack of clear rules.”
Clear discussions between doctors and patients about the potential dangers and benefits of suggested treatment approaches are also essential, according to Abramoff, because extended COVID is so new and so many therapies for the condition have not yet been established.
And if recovery stalls, patients should rethink their options, regardless of whether they finally decide to stay with a primary care physician or switch to a long COVID centre for care.
When a patient is eager to work with you and has backup plans in place in case their initial treatment is unsuccessful, Abramoff argues that they are receiving good care.
Here are some more lengthy COVID materials.
