A significant development aimed at addressing the multifaceted challenges posed by Long COVID. A report by the National Academies of Sciences, Engineering, and Medicine (NASEM), commissioned by the Administration for Strategic Preparedness and Response and the Office of the Assistant Secretary for Health, emphasizes the urgent need for a standardized approach to recognize Long COVID as an infection-associated chronic condition persisting for at least three months after COVID-19 infection. Jerry Krishnan, MD, PhD, Professor and Associate Vice Chancellor for Population Health Sciences at the University of Illinois Chicago, and member of the committee shares NASEM’s process in clarifying their newfound definition.
“Long COVID is an “infection-associated chronic condition” (IACC), which can be triggered by viruses, bacteria, funding, or parasites. Examples of other IACCs include Lyme-associated chronic illnesses or various disorders after Giardia infections. The 2024 NASEM committee hopes that the use of IACC in the definition of Long COVID can promote research across what previously were considered largely different diseases, allowing for cross-disease learning and actionable insights.”
This definition has been coined through various terms being proposed for chronic conditions after the initial infection with SARS-CoV-2 during the COVID-19 pandemic, including Long COVID.
“We now know that Long COVID can present in different ways in different people – including which symptoms, when they start, whether they are persistent or fluctuate in severity or frequency, impact on a person’s life, and how long they last. So, the 2024 NASEM definition acknowledges the heterogeneity of trajectory and severity.”
Main Takeaways
- The NASEM has proposed a unified definition for Long COVID, defining it as an infection-associated chronic condition persisting for at least three months after COVID-19 infection, aiming to standardize diagnosis and treatment approaches.
- The development of this definition involved extensive engagement with over 1,300 stakeholders, including patients, caregivers, healthcare providers, and policymakers, ensuring diverse perspectives were incorporated into the process.
- The new NASEM definition acknowledges current gaps in understanding Long COVID, prompting a call for continued research to improve diagnostics, understand its underlying causes, and develop effective treatments, with flexibility to adapt as new knowledge emerges.
Recognizing these complexities, the NASEM report underscores the importance of broad stakeholder engagement and interdisciplinary dialogue in formulating the new definition. The committee responsible for the report engaged over 1,300 participants, prioritizing diverse perspectives including those of patients.
“NASEM had an extensive approach to soliciting input from various stakeholders, including patients and other individuals across multiple sectors in focus groups, via an online questionnaire and portal for public comments, and a 2-day hybrid in-person and virtual symposium. A key lesson learned from these multi-stakeholder engagements is that we have much to learn from patients with Long COVID and their families and other caregivers, and healthcare providers on the front lines,” according to Krishnan.
The new definition of Long COVID is intended to serve multiple purposes, encompassing clinical care, eligibility criteria for health services, insurance coverage, disability benefits, educational and workplace accommodations, public health strategies, social services, policymaking, epidemiological surveillance, and both private and public research initiatives. It aims to enhance public awareness and education, particularly among patients, families, and caregivers.
“The 2024 NASEM definition relied on the current state of evidence and input from various stakeholders. At this point, there is a paucity of information about the pathogenesis of Long COVID and there are no known biomarkers of the disease process or processes that we call “Long COVID.”The diagnosis of Long COVID therefore relies exclusively on history and the symptoms that patients report may have multiple etiologies,” explains Krishnan.
According to the report, the new definition of Long COVID aims to serve diverse purposes, including clinical care, health service eligibility, insurance coverage, disability benefits, educational and workplace accommodations, public health strategies, social services, policymaking, epidemiological surveillance, and research initiatives.
“By standardizing the terminology and use of a simple to understand phrase (“Long COVID”), has the potential to accelerate the research that is already underway. The 2024 NASEM Long COVID Definition is by design inclusive but allows researchers flexibility in designing studies that are consistent with the definition while also sufficiently specific to meet the study objectives. The 2024 NASEM committee recognizes that research is needed to fill several gaps in our knowledge about Long COVID, including a better understanding of the epidemiology (risk factors, trajectory of symptoms), pathogenesis (underlying cause(s), and validated biomarkers to facilitate diagnosis), and treatments that are safe and effective,” states Krishnan.
All in all, The National Academies report marks a critical step toward addressing the complex landscape of Long COVID by advocating for a cohesive definition that unifies efforts across healthcare, policy, and research domains. As stakeholders consider these recommendations, the hope is to mitigate the challenges faced by Long COVID patients and foster a more coordinated approach to understanding and managing this persistent health challenge.
Krishnan finishes by stating, “Research is needed to improve the sensitivity and specificity of laboratory tests to identify individuals who have been previously infected – months or years ago. We also solicit input from all stakeholders as they apply the 2024 NASEM Long COVID Definition and recommend the definition be updated when relevant new knowledge is available or in three years, whichever occurs first.”
References
