Erica Weiss is the Senior Writer for NACHC’s Clinical Care and Quality.
Health centers have been seeing patients with long COVID symptoms, but they haven’t gotten strong guidance or resources to manage this condition. To start, we should define “Long COVID”:
Long COVID, or Post-Covid Conditions as defined by the Centers for Disease Control and Prevention (CDC), includes the wide range of cognitive and physical conditions present four (4) or more weeks after a COVID infection. The World Health Organization (WHO) considers symptoms that last longer than 12 weeks to be Long COVID (or post-acute sequelae of SARS-CoV-2 (PASC).
Whichever timeframe you pick, more patients than we realize are experiencing debilitating Long COVID symptoms after a severe, mild, or asymptomatic acute infection – and health centers, have found themselves caring for a large number of cases.
Community Health Center patients disproportionately represent essential workers and people who have been heavily impacted by COVID-19. Health center patients in NACHC’s large (>1 million patients) sample, had a positivity rate for COVID that was 16.7%. This rate is far higher than the national average. More COVID = More post-COVID syndromes.
With federal COVID insurance ending, uninsured health center patients no longer have access to care outside health centers, meaning they generally can’t access specialists and allied health professionals necessary for post-COVID care. Health center patients without insurance represent, on average, 25% of patients.
The scope of the Long COVID problem
It’s been a real challenge for health center care teams (all providers, really) to recognize post-COVID symptoms since conditions like fatigue or sleep disturbance are also common with aging, disabilities, or other illnesses.
The good news is that Long COVID symptoms are often treatable if providers make a conscious effort to ask patients if/when they had COVID-19 when they come with new, returning, or ongoing physical or cognitive symptoms. It also helps to tell patients with an acute COVID infection that they should come back for care if a symptom persists.
The CDC estimates 1 in 5 adults (1 in 4 older adults) who had COVID-19– at least 6 million people in the U.S. – report Long COVID symptoms. Women are more likely to experience symptoms, as are people with disabilities.
The most common post COVID symptoms are fatigue, sleep disturbance, shortness of breath and exercise intolerance, “brain fog”, cough, and chest pain. View a broader list of symptoms from the CDC.
“Designing our health care delivery services with EMPATHY is powerful for patients, especially when there is so much unknown about this condition. There’s a lot of anxiety, fear, anger, jealousy, sadness, and many other emotions we feel as patients,” said Fred Rachman, MD, Chief Executive Officer, AllianceChicago – and a Long COVID patient.
What is NACHC doing about Long COVID?
The National Association of Community Health Centers (NACHC) is advocating intensely to generate resources and clear guidance for health center care teams and patients. NACHC leaders presented at the CHI meeting in August, participate in the Working Group on Health Equity, consult with the White House COVID-19 task force, coordinate with the CDC, and participate in the National COVID Cohort Collaborative (N3C) and the American Academy of Physical Medicine and Rehabilitation (AAPM&R), among others.
Long COVID conditions have an unknown duration and can heavily impact a patient’s wellbeing. Patients experiencing any Long COVID symptoms are at high risk for co-occurring anxiety and depression. Because Long COVID is a new condition with constantly emerging evidence, health center Care Team members need training and resources to recognize symptoms and treat them as high-risk life events that impact physical and mental health.
What can health center care team members do?
If we’re not diagnosing Long COVID at health centers, then we’re probably not asking the right questions. It’s important to:
- Inform patients with acute COVID about the potential for long-term symptoms. Ask them to reach out if they experience a symptom that seems like Long COVID.
- Ask about symptoms. Recognize a pattern. If a patient comes in with one or two symptoms, especially if they are new to the patient (severe fatigue, physical weakness, brain fog, shortness of breath, cough, exercise intolerance, dizziness, heart palpitations, chronic pain, headaches, chronic tingling, mood disorders, changes in menstrual cycle…)– these signs could be Long COVID
- Ask if symptoms began after a COVID infection or the vaccine. And ask how long after.
- Avoid unnecessary tests and regularly reevaluate symptoms. Use testing to rule out other medical and mental health causes of symptoms. If there is no clear cause, consider symptoms to be Long COVID. Try to avoid extra, anxiety-provoking tests.
- Ask what medications a patient is currently taking, take their medical history, and ask how their symptoms affect their life.
- Schedule more touchpoints during the active phase of Long COVID symptoms. Patients benefit from a longitudinal and supportive care relationship.
- Treat the symptoms you can treat. Offer supportive treatments and use allied health and behavioral health professionals to support symptom management. New research and guidelines show that there are evidence-based therapies for many Long COVID symptoms.
“Managing Long COVID requires consistent, long-term engagement with patients and continued collaboration with a range of care team specialists,” said Julia Skapik, MD, MPH, FAMIA, Chief Medical Information Officer, NACHC.
Are there Long COVID evidence-based guidelines for care team members?
“There are no universal treatments for Long COVID, so you’ll have to tailor palliative care for each person. Know that while there are a lot of symptoms out there, there are several similar strategies that help treat most cognitive and physical symptoms. The AAPM&R guidelines are helpful.” said Benjamin Abramoff, MD, MS, Asst. Prof. Clinical Psychical Medicine and Rehab., Co-Founder and Co-Director of COVID Recovery Clinic, Dept. of Physical Medicine and Rehab.; Dir. Post-COVID Assessment and Recovery Clinic, Univ. of PA.
AAPM&R offers the following resources based on groupings of the main Long COVID symptoms seen:
- Fatigue (train patients in the energy-conserving 4 P’s (Prioritize, Plan, Pace, and Position))
- Cognitive symptoms (including Cognitive Behavioral Therapy, compensatory tools, other techniques)
- Breathing discomfort (including inhalers, respiratory therapy, physical therapy for structured breathing)
- Cardiovascular complications (including pacing and energy conservation tips plus lab and imaging tests)
- Autonomic guidance statement (coming soon)
“Expectant management is important. Patients should feel like they have continuity of care, rather than feel pushed from specialist to specialist. Be a point of contact and check in. That alone is therapeutic for patients. Teach patients self-management tools and recognize that their symptoms are interconnected. Most patients ultimately feel better; still, some will have serious health consequences,” said Abramoff.
Because Long COVID is still being studied with evolving definitions and guidance, it’s important for us to stay aware of updates and be clear that millions of people are struggling. Our health centers are, once again, serving on the front line.
NACHC is working hard to collect and clarify guidance for health center staff, and advocate for resources to help. We will continue to provide information as we learn it. NACHC’s COVID-19 Resources for Community Health Centers can be found here: https://www.nachc.org/coronavirus/