Top US hospitals, as recognized by a popular magazine ranking, already frequently provide long COVID services and advertise them with varying levels of detail. The services they provide often include meeting with a team member at the clinic and referrals to a wide range of specialists. They also include clinical trial opportunities but appear not to be limited to trials. These findings, to our knowledge, are the first in characterizing the services offered at long COVID treatment centers at top hospitals. Others have characterized long COVID centers based on a convenience sample of surveys sent to long COVID centers earlier in the COVID-19 pandemic. (https://onlinelibrary.wiley.com/doi/https://doi.org/10.1002/pmrj.12766 ) Moreover, healthcare models have been developed with the intent to adaptively address needs of the healthcare organization and the patient population of the respective organization. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10165471/ ; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8594397/ ; https://pubmed.ncbi.nlm.nih.gov/36324552/ )
Here we present several key findings from our research. One overall finding is that 86% of hospitals offer long COVID services, which is the majority of hospitals in our dataset. Neurology, psychology, and pulmonary were the three most commonly mentioned specialists to where long COVID centers might provide a patient referral. We have previously reported that the most common symptoms ascribed in long COVID study definitions were fatigue, shortness of breath, cognitive impairment, and joint/muscular pain [1], which are commonly seen by these specialists.
There has been a great deal of research into the biological and pathological underpinnings of long COVID. The results of these studies are inconsistent in whether there are differences in pathological measurements between people who have had COVID-19 and those who have not. (https://www.ajnr.org/content/ajnr/44/5/517.full.pdf ) https://journals.physiology.org/doi/pdf/https://doi.org/10.1152/ajpheart.00335.2022 ) The results of these comparison studies highlight the difficulty in developing treatment options for a condition that is not only heterogeneous in symptoms, but also does not always manifest with pathologic differences from those without COVID-19. Ideally, services offered at the clinics would be based on known scientific understanding.
7% report that they will offer some medications as therapy, yet, to our knowledge, no treatment has received US FDA approval for long COVID. Medications may be prescribed to treat related conditions, and adequately powered randomized trials should be conducted to assess whether treatment options are effective in patients with long COVID.
We found 134 long COVID studies registered on clinicaltrials.gov. Of these studies, 54% were randomized, but just over one-quarter were observational. These percentages were similar for studies sponsored/conducted by top hospitals with long COVID centers vs. not sponsored/conducted. Observational studies are helpful for studying the long-term prognosis, but in order to find effective preventive and treatment strategies, randomized trials are essential. In other words, we need randomized trials, not “random” care, to determine appropriate care in the shortest amount of time [9].
Others have informally assessed the geographical distribution of long COVID treatment centers, nationally. From their assessment, there were two notable observations [10]. First, most long COVID care is offered by physical therapy and rehabilitation centers. Two, there appears to be a mismatch between long COVID clinic locations and the prevalence of long COVID in an area. While our results are limited to long COVID centers at top US hospitals, our findings indicate that most services encompass meeting with team members at the clinic and referrals to specialists. Rehabilitation services are specifically mentioned as initial services on only a few clinic/program websites but are common outcomes of referrals. However, our findings indicate that there are large geographical regions with limited care to long COVID centers or programs at top hospitals.
The finding that most (65%) clinics and programs do not indicate the department that the program or clinic resides suggests that many clinics are independent departments and that hospitals are not only heavily invested in providing immediate care, but also care well into the future. Indeed, hospitals have had to pivot and adapt to changing markets during and since the COVID-19 pandemic began [11].
A concern with the high number of specialist referrals at these clinics is the already long wait time for patients to see a specialist, where non-COVID patients can wait up to a median of about 2.5 months to see a specialist [12, 13], but a backlog due to delayed care during the pandemic could likely increase these times [11]. Anecdotal data suggest that patients who attend long COVID clinics also experience a long wait time before they can be seen and sometimes make long drives for their appointments [14]. The time to see a healthcare provider, and especially a specialist, could further increase given the number of people being diagnosed with this condition and referred to follow-up care. Non-traditional modes of healthcare delivery, including telemedicine, may be options for increasing access to healthcare for patients with long COVID, including pregnant, pediatric, older individuals as well as those from racial/ethnic minority groups. (https://pubmed.ncbi.nlm.nih.gov/37419538/ )
Our analysis has several limitations. For one thing, we were using websites that may not have reported the most current information. Related, the websites may not have provided all information related to the care they provided. Our results are from the view of the patient who may be seeking for long COVID care with the help of general Google searches. Another limitation is that our results are not generalizable to long COVID centers at-large. We used a list of the top hospitals, which would theoretically result in a sampling of top long COVID centers, with the ability to deliver expert care across a broad spectrum of medical specialties. Additionally, a different list of top hospitals, based on other metrics, could result in different characteristics of long COVID centers.
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