What is Long COVID?
According to federal public health agencies, Long COVID first received an interim working definition in February 2021, approximately one year after the first confirmed case of COVID-19 was diagnosed in Washington state. Created by collaborations between federal agencies and the engagement of “patient groups, medical societies, and experts inside and outside the government,” the current definition reads:
“Long COVID is broadly defined as signs, symptoms, and conditions that continue or develop after initial COVID-19 or SARS-CoV-2 infection. The signs, symptoms, and conditions are present four weeks or more after the initial phase of infection; may be multisystemic; and may present with relapsing-remitting pattern and progression or worsening over time, with the possibility of severe and life-threatening events even months or years after infection. Long COVID represents many potentially overlapping entities, likely with different biological causes and different sets of risk factors and outcomes.”
In May 2022, the Centers for Disease Control and Prevention (CDC) reported the 26 most common clinical conditions, highlighting what researchers and clinicians said is now also important for patient care: Long COVID is not just one condition, but many.
Guessing at Rural Long COVID Patient Numbers: In the Millions?
How many rural people have Long COVID? In a recent Project ECHO Long COVID and Fatiguing Illness webinar, one academic clinician translated data percentages from the CDC’s online 2022 household survey and estimated that anywhere from seventeen to nineteen million American adults are currently experiencing the condition. Although no rural data was directly collected in the CDC’s survey, further extrapolation to provide a rural estimate — using the most recent U.S. Census Bureau rural population percentage of 20% — suggests that around 3.6 million rural Americans may have Long COVID.
Experts do seem to agree that people who have experienced a prior COVID infection as a severe — or even a mild illness — and then go on to experience Long COVID numbers in the millions. Researchers also pointed out that Long COVID prevalence rates change due to ongoing research efforts around the conditions and the various efforts tracking the occurrence of those conditions, the latter often represented in two categories: people who have had long COVID and those currently experiencing Long COVID.
A recent global review completed by researchers in the United Kingdom revealed that “45% of COVID-19 survivors, regardless of hospitalization status, were experiencing a range of unresolved symptoms at ∼ 4 months.” Other analyses reported prevalence rates varying from a low of 3%, recently reported by a large Michigan health system chart review, to 7.5%, to the CDC data from household surveys indicating around 15% having experienced Long COVID. Ongoing CDC surveys in the category of those “currently experiencing” Long COVID, demonstrated mid-February results of around 6%.
Prevalence of having had v. currently experiencing Long COVID
What is happening at the state level? ETSU’s Hale pointed out that CDC data is revealing that the highest rates of self-reported Long COVID symptoms are in states often considered quite rural. The top five states in December 2022 were Montana, Wyoming, Mississippi, Kentucky, and Alaska. In February, there was a similar rural state distribution, with West Virginia moving to the top of the lineup, followed by Wyoming, Montana, Mississippi, and Utah.
What About the Money? Rural Costs of Long COVID
For many reasons — such as the conditions only recently released definition and the lack of a structured data collection system — few reports have addressed Long COVID costs, let alone costs in rural America. However, one recent economic update suggested that for the United States the costs of lost quality of life (QOL), lost earnings, and higher medical spending are near $3.7 trillion, with 60% of that attributed to QOL costs.
Rural public health experts also emphasized that the condition will have significant economic ramifications and that there is a need to collect rural data directly since simply extrapolating numbers can be dangerously misleading, especially since urban and rural economic analyses often have few elements in common.
“It’s important to know that Long COVID is a real condition,” said Antonello Punturieri, MD, Ph.D., a program officer in the Division of Lung Diseases at the National Heart, Lung, and Blood Institute, which is part of NIH. “It’s also important to be aware of the fact that Long COVID can occur even after a very mild acute infection and can severely affect one’s quality of life.”
While he noted that there is currently no cure for Long COVID conditions, anyone with lingering symptoms after they have had COVID-19 should still seek care from a healthcare provider to offer a diagnosis. He also pointed out that vaccination is still the key to not only preventing the severe progression of the acute viral illness but possibly also preventing Long COVID.
Establishing a Long COVID Diagnosis
With his Long COVID experience, ETSU researcher Hale, along with Stupple, emphasized that for people with a prior history of acute COVID-19, either mild or severe, lingering, or new symptoms should be evaluated. However, as a routine, an extensive diagnostic work-up is costly and may leave some patients without many answers.
Recent research indicates that many patients undergoing comprehensive and extensive evaluations are feeling unsettled about such testing approaches. One report summarized additional perspectives: Patient respondents — 17% of which were rural — found that many medical professionals dismissed their experiences, yet still suggested “lengthy diagnostic odysseys” that offered very little in the way of treatment.
Another key suggests that Long COVID management can be provided by primary care providers, such as Cape Family Medical Clinic using approaches that focus on physical, mental, and social well-being. The additional use of shared decision-making models and symptom-focused treatments is helpful, such as physical therapy, occupational therapy, and behavioral healthcare.
If you are struggling with symptoms that may be Long COVID, please do not wait, don’t hesitate to get an appointment with your healthcare provider.
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