This series won a Fall 2022 Silver Digital Health Merit Award.
Editor’s Note: This is the third in a series of articles presenting crucial topics on long COVID and chronic pain syndromes. Part 1 addressed how long COVID research may improve understanding of fibromyalgia and CFS, and Part 2 addressed chronic pain associated with long COVID. Here, in Part 3, the author discusses long COVID clinics as a model for chronic pain care. These topics are addressed, in greater detail, in the author’s book, Unravelling Long COVID, by Don Goldenberg and Marc Dichter, from Wiley Publishers.¹
Long COVID in 2022
Long COVID, also termed post-COVID syndrome or post-acute sequelae of SARS-CoV-2 (PASC), has become a major health concern. It is estimated that 7 million Americans may be suffering from long COVID. The National Institutes of Health (NIH) has earmarked more than $1 billion for research and management of long COVID, and multispecialty clinics to evaluate and treat individuals with post-recovery symptoms have been set up in almost every state.
These clinics may serve as a model for improved therapy of many chronic, poorly understood illnesses, including chronic pain.
This article will explore the potential that long COVID clinics may provide new chronic illness models that:
establish better disease diagnostic classification
include greater primary care involvement
are based on an integrated multidisciplinary clinic structure
promote patient-centric, biopsychosocial approaches to care
Long COVID and Chronic Pain: A Better Diagnostic Classification
To date, there is no universally accepted definition or diagnostic criteria for long COVID or for chronic pain. The diagnosis of long COVID is considered in individuals who have medical symptoms following SARS-CoV-2 infection that persist and cannot be explained by another medical condition. However, there has been no consensus regarding what these medical “symptoms” consist of, what constitutes “persistence,” and how to define “another” medical condition.
The most common symptoms in long COVID are fatigue, dyspnea, and cognitive, mood, and sleep disturbances, but more than 200 symptoms have been described. Many studies of long COVID include people with only one persisting symptom, whereas other studies specify three or more symptoms. The duration of time for persistent symptoms has ranged from 1 to 3 months in most long COVID studies. Very few long COVID definitions included symptom severity.
In any medical condition defined by symptoms, it is important to control for the presence of similar symptoms in the general population. Most reports of long COVID have not utilized such population controls. The methodology of these studies has also varied, with many involving community-based longitudinal surveys and a smaller number of studies relying upon medical electronic health records (EHRs). While longitudinal studies have the advantage of assessing patients’ lived experience and can survey pre-pandemic health symptoms, such data seldom control for symptoms in the general population and are subject to individual patient recall bias. EHR-based studies, on the other hand, accurately compare symptoms in patients to those of matched controls but only survey patients with a medical diagnosis of long COVID or similar diagnoses in the record.
The most difficult diagnostic issue is related to defining another medical condition. This has been especially challenging in whether long COVID should include patients who have evidence of organ damage. Patients with well-defined organ damage, what we term long COVID disease, include many hospitalized patients, some who might have been labelled as post-ICU syndrome.¹ In contrast, long COVID syndrome includes the majority of non-hospitalized patients who have chronic medical symptoms but have no evidence of organ damage or underlying disease.
Because of this lack of uniform diagnostic criteria, the estimates of long COVID prevalence have varied dramatically, from 2% to 10% to 30% to 50% of SARS-CoV-2 infected patients. Our own more stringent long COVID definition is similar to recent international definitions and includes patients with at least 3 of the more characteristic symptoms that have been present for at least 2 to 3 months and that can’t be explained by a known medical disorder.²
When talking about chronic pain, the assessment and treatment challenges are similar, and overlap between chronic pain syndromes and long COVID are explored in more detail in earlier parts of this report series. Like long COVID, chronic pain consists of multiple patient phenotypes, all lumped together. Patients with a well-defined structural factor for their chronic pain may have a different outcome and respond to different therapy than those with no such factor.
In fact, only in the past 10 to 15 years has chronic pain been recognized “as a disease in itself.”³ It was not until 2019 that the International Classification of Diseases (ICD) established a diagnostic coding system for chronic pain and changed the chronic pain classification to reflect the importance of distinguishing subsets of chronic pain patients, such as those with associated cancer, neurologic conditions, or with structural damage.⁴
Steps to Improve Definitions/Classification Criteria for Long COVID and Chronic Pain
Symptoms should be compared to those in general population
Include longitudinal patient surveys and medical records
Define the minimum duration of symptoms
Determine the requisite symptom severity
Distinguish patients with any other medical condition
Is there organ damage?
Recognize different disease phenotypes
Greater Primary Care Involvement
Most long COVID clinics in the US do not involve primary care physicians (PCPs). Similarly, chronic pain clinics in the US are generally not integrated with primary care practices. Yet, in the US, PCPs often feel overwhelmed when trying to manage long COVID (as well as chronic pain). As noted, long COVID can present with multiple symptoms (some subjective, and without physical or laboratory evidence) and involve many internal body systems. Add to this the fact that there is no clear guidance regarding testing or referral pathways for the condition.
In the United Kingdom, primary care teams are very much involved in COVID care, largely because 90% of all UK National Health Service (NHS) contacts take place within primary care. Thus, their long COVID clinics were easily integrated into the country’s NHS.⁵ Primary care teams normally include general practitioners, advanced clinical practitioners, healthcare assistants, clinical pharmacists, and physical therapists, all of whom share electronic and clinic records. In the UK, guidelines for chronic pain management have been regularly updated by the National Institute for Health and Care Excellence (NICE).²
The sheer volume of individuals living with both long COVID and chronic pain conditions requires that primary care be intimately involved in diagnosis and management going forward. While this is already in place in other countries, the US specialty-oriented healthcare makes this more challenging. I believe that a greater focus on integrating public health, primary care, and mental health is crucial to optimal care of patients with long COVID as well as with chronic pain.
Long COVID Multidisciplinary Clinic Protocols
The first long COVID clinics in the US, also termed COVID-19 Recovery Clinics, opened in May and June of 2020 at major medical centers in New York. Initially, these clinics were established to facilitate the recovery of hospitalized individuals with COVID-19 infection and help them transition back home. However, as the persistent symptoms of long COVID became better recognized and characterized, the role of these clinics evolved, and they have become central figures in the diagnosis and treatment of long COVID.⁶
Although there is no official, government-sponsored long COVID clinic body or website, Survivor Corps, a patient-run organization, has published lists of available Post COVID Care Centers (PCCCs) in the US and other countries. As of June 2022, their website listed more than 200 long COVID clinics in the United States, including 30 in New York state and 20 in California. These consist of large, medical center-associated clinics as well as small, independent clinics. (To compare, in the UK, more than 70 long COVID clinics are listed, all under the auspices of the National Health Service.)
Structure of Long COVID Clinics in the US
Currently long COVID clinics in the US tend to follow this structure:
Initial Triage
Non-physician or PCP
Often virtual
Use standardized assessment
Specialty evaluation of symptoms and potential organ damage
Patient management
Integrated multidisciplinary team care
Patient-centric
Individualized rehabilitation
Common outcome measures, such as the Yorkshire Rehabilitation Scale
Ongoing education and evaluation
Share information to develop best practice guidelines
These steps are described in more detail below.
Triage and Initial Evaluation
Most long COVID clinic teams in the US begin their patient assessment with a virtual or in-person triage to determine if the patient meets criteria for a clinic appointment. Currently, there are no adequate guidelines on when to refer patients to long COVID clinics. Many clinics require that patients’ symptoms have persisted for more than 3 months. This seems reasonable since many patients improve between 1 and 3 months. In most instances, patient referral has been determined more by treatment concerns than by diagnostic concerns.
Many long COVID clinics initially triage patients virtually, utilizing a standardized symptom evaluation protocol.⁷ (These standardized questions include a complete history with a detailed symptom description. Specific neuropsychiatric screening questions should include symptoms of depression, anxiety, PTSD, sleep disturbance, cognitive disturbance, and neuropathy.⁶⁻⁸
Pain questions should consider descriptions and severity of muscle pain, joint pain, headache, and widespread pain, such as the fibromyalgia widespread pain index (WPI) instrument. Evaluation of patient activity and function should include questions regarding exercise, mobility, and work; questions regarding mood should include coping, fear, helplessness, hopelessness, stigma and isolation, family, and friends. Standardized quality of life surveys should include self-care, independence, need for medical care, hospitalization, and financial impact.
Specialty Services
Once the initial triage evaluation is complete patients are referred to one or more specialists, based on current symptoms. Often, these can be broadly subdivided into cardiopulmonary or neurocognitive symptoms. The primary goal of this initial specialty evaluation is to assess the role of potential organ damage. For example, a pulmonologist may order pulmonary function tests or repeat a lung scan, a cardiologist may order an echocardiogram or cardiac imaging and a neurologist ask for a brain MRI or neuropsychological tests. These tests will guide further work-up and treatment.
Long COVID clinics, particularly those affiliated with medical centers, employ a variety of physician and allied healthcare professionals. Most clinics utilize multidisciplinary teams, and at medical centers in the US, these clinics most often have been under the auspices of a physical and medicine (PM&R) department. The clinics have included pulmonary/respiratory specialists (involved in 100% of clinics surveyed),⁸ cardiovascular specialists (92%), psychiatry and psychology (83%), physical therapy (83%), occupational therapy (75%), social work (75%), neurology (75%), primary care physicians (58%), nutrition (58%), and speech and language therapists (50%).⁸
Establishing long COVID clinics within existing PM&R programs – major players in the chronic pain management space – was ideal since PM&R provides neurocognitive testing and documents physical and psychological function with established expertise in long-term rehabilitation. PM&R also is best able to address the complicated issues involved with activity and exercise programs.
Despite the controversy regarding exercise recommendations in long COVID, most long COVID clinics do initiate a cautious structured and supervised exercise program. This is done in increments, starting with walking, breathing exercises, gentle stretching, and light muscle strengthening. Treatment should include self-management strategies to improve the person’s functioning and quality of life.
Integrating Patient Care and Research
In any poorly understood, chronic illness without defined disease markers, patient experience is especially crucial to understanding and treating the condition. As discussed throughout this series on long COVID and chronic pain, ongoing research efforts in the US, such as the $1 billion earmarked for the RECOVER study, have included patient experience and expertise. Many of the RECOVER investigators are also participating in long COVID clinics in the US.
However, most NIH money is going to research rather than to direct patient care. For example, by July 2022, the Mount Sinai long COVID clinic had recruited more than 5,000 adult and pediatric subjects, a much higher number than those enrolled in the nation’s RECOVER research sites.⁹ Even in July 2022, only 80 of the 100 of the RECOVER centers listed on the NIH website were accepting patients, approximately 9 months after NIH funding began.
Many of the US and UK long COVID clinics were designed to rely heavily on patients’ lived experience. Outcome measures have focused on validated patient-reported measures, which have been surveyed in the clinic as well as in the patients’ home or workplace. One such outcome measure, the COVID-19 Yorkshire Rehabilitation Scale, would be appropriate to use in chronic pain settings.¹⁰ This is a 23-item questionnaire that patients complete on a smartphone app, grading symptom severity, functional limitations, and overall health.
The long COVID clinics in the US and UK have shared their initial experience, informally in the US and as part of government funding in the UK.¹¹ With built-in mechanisms to regularly collaborate, it is anticipated that such efforts will eventually produce a best-practice protocol.
Biopsychosocial Approach to Patient Care
As noted, long COVID and chronic pain do not fit classic biomedical disease models. Pathophysiology is not well understood. Organ damage does not necessarily correlate with symptoms or prognosis. Laboratory tests and imaging may be unremarkable. Patients may sense skepticism and feel stigmatized. A biopsychosocial model should be encouraged.
Both clinicians and patients must recognize the bidirectional mind-body interaction that governs chronic illness. Medications may be utilized, but there is no strong evidence that they are effective in these complex conditions. It is important, therefore, to evaluate the efficacy and adverse impact of medications, particularly with RCTs. Until more is known, medications should be used in conjunction with an activity and exercise program and psychological therapy, such as cognitive behavioral therapy to provide a biopsychosocial approach to care.
Practical Takeaways
Clinicians treating long COVID and chronic pain struggle with similar concerns, such as do these conditions represent a specific disease state, how can they be best diagnosed, what is the role of primary and specialty care, and how can care be best organized?
I believe there are four principles to improve patient care for long-COVID and chronic pain patients, better disease definition, greater primary care involvement, an integrated multidisciplinary evaluation, and treatment based on patient-centric, biopsychosocial illness models. PM&R specialists must be an essential component of patient management. Outcome measures should be validated and shared across clinics, and close clinic collaboration should be encouraged. Patients should be educated that their symptoms can be managed but also understand that there is often no cure.
Finally, society at large must recognize the enormous economic and quality of life burden stemming from these chronic conditions and push ahead a research and treatment plan that is long overdue.
This September, PPM and HealthyWomen are hosting a webinar series on long COVID and pain experiences including expertise from Dr. Monica Mallampalli and Dr. Goldenberg. Stay tuned for details.