Coding Considerations for COVID Related Chronic Conditions - Long COVID
Key Takeaways
Long COVID is defined as an infection associated chronic condition that occurs after SARS CoV 2 infection and is present for at least three months, affecting one or more organ systems.
Long COVID can follow asymptomatic, mild, or severe COVID-19 infection and may present as continuous, delayed onset, relapsing, or progressive disease.
There is no laboratory test or biomarker that conclusively determines Long COVID, and diagnosis is based on patient history, symptoms, and clinical evaluation.
ICD-10-CM coding for post COVID conditions requires assignment of codes for the specific related symptoms or conditions along with U09.9, Post COVID 19 condition, unspecified, when applicable.
Accurate code assignment depends on clear provider documentation linking the current condition to a prior COVID 19 infection, and a query is necessary when documentation lacks clarity.
The COVID-19 pandemic claimed the lives of more than a million Americans and an estimated 7 million worldwide. New cases of COVID 19 due to the SARS-CoV-2 continue to occur, although the initial crisis has passed. Reinfection can happen at any time, and with each reinfection, the risk of developing Long COVID exists. Long COVID has been diagnosed in approximately 7% of adults and greater than 1% of children in the United States. Long Covid Defined | New England Journal of Medicine
There is distinct demographic data regarding who is more likely to develop Long COVID. Women, Hispanic or Latino people, patients who experienced severe COVID 10 illness, adults 65 or over, people with underlying co-morbid conditions, and the unvaccinated are more likely to develop Long COVID. Long COVID Basics | Long COVID | CDC.
The CDC cites that Long COVID is not one illness, and there is no laboratory test to tie symptoms or conditions to post COVID chronic disease. Consideration of a COVID-related chronic illness is based on the patient's history of a past positive diagnosis of COVID-19 via a test, symptoms, or exposure, and a health examination. Defining Long COVID has been a challenge due to the variety of associated chronic, systemic, and at times disabling conditions. Hence, in 2024, the Office of the Assistant Secretary of Health in the Department of Health and Human Services tasked the National Academies of Sciences, Engineering, and Medicine (NASEM) to research and develop a definition of Long COVID.
The 2024 definition of Long COVID is as follows: “Long COVID is an infection-associated chronic condition that occurs after SARS-CoV-2 infection and is present for at least 3 months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems.”
The full number of associated signs, symptoms, and conditions associated with Long COVID are too numerous to list. Some of the more prevalent findings are shortness of breath, unrelenting fatigue, difficulty concentrating, frequent headaches, dizziness, tachycardia, sensory disturbances affecting taste and smell, and gastrointestinal symptoms of bloating, diarrhea, and /or constipation.
This can manifest in any one organ system or multiple organ systems. Diagnoses associated with post-COVID conditions can include the following:
Respiratory difficulties, such as interstitial lung disease, hypoxia, and oxygen dependence.
Cardiovascular problems such as arrythmias
Neurological problems such as mood disorders, migraines, stroke, myalgic encephalomyelitis, and cognitive impairment. A variety of forms of dysautonomia, such as postural orthostatic tachycardia syndrome
Chronic Kidney Disease
Hematological concerns such as blood clots, or mast -cell activation syndrome
Autoimmune disorders such as Lupus, Sjogren’s, and rheumatoid Arthritis
Connective tissue diseases such as fibromyalgia
Endocrine diseases such as Diabetes or hyperlipidemia
Chronic Fatigue Syndrome
The NASEM research published in the New England Journal of Medicine identified the following features related to Long Covid:
It can follow asymptomatic, mild, or severe SARS-CoV-2 infection. Previous infections may have been recognized or unrecognized.
It can be continuous from the time of acute SARS-CoV-2 infection or have a delayed onset for weeks or months after what had appeared to be full recovery from acute infection.
It can affect children and adults, regardless of health, disability, or socioeconomic status, age, sex, sexual orientation, race, ethnic group, or geographic location.
It can exacerbate preexisting health conditions or present as new conditions.
It can range from mild to severe and can resolve over a period of months or can persist for months or years.
It can be diagnosed on clinical grounds; no biomarker that is currently available conclusively determines the presence of this condition.
It can impair patients’ ability to work, attend school, take care of family, and care for themselves, resulting in profound emotional and physical effects on the patients, their families, and caregivers.” Long Covid Defined | New England Journal of Medicine
Multisystem Inflammatory Syndrome (MIS) is also a post-COVID-19 condition. It is most prevalent in children (MIS-C) and has occurred in a small cohort of adults (MIS-A). This is a serious hyperinflammatory condition that presents approximately 4 weeks after the onset of COVID -19 and produces extrapulmonary multiorgan dysfunction in adults. Clinical Characteristics of Multisystem Inflammatory Syndrome in Adults: A Systematic Review | Infectious Diseases | JAMA Network Open | JAMA Network
In children (MIS – C), this can occur weeks after a SARS-CoV-2infection without regard to whether the patient was asymptomatic or had a severe case of COVID-19. Children will present with fever, and one or more of the following: nausea, vomiting, diarrhea, mucocutaneous lesions (such as conjunctivitis), or skin rash. Laboratory tests in support of MIS-C include elevated C-reactive protein, ferritin, and/or troponin. In some cases, thrombocytopenia and lymphopenia can occur. Remember, the presence of these laboratory findings must be noted by the treating provider and linked to MIS – C for correct ICD-10-CM Code Assignment. Clinical Overview of Multisystem Inflammatory Syndrome in Children | MIS | CDC
The key for coders is a linkage statement from the provider connecting the current diagnosis under care back to a COVID infection. Over the past few years, Official ICD 10 CM Guidelines have evolved to address correct code assignment in each of these circumstances.
The ICD-10-CM Official Guideline for coding post-COVID follow-up encounters is as follows:
“Follow-up visits after COVID-19 infection has resolved - For individuals who previously had COVID-19, without residual symptom(s) or condition(s), and are being seen for follow-up evaluation, and COVID-19 test results are negative, assign codes Z09, Encounter for follow-up examination after completed treatment for conditions other than malignant neoplasm, and Z86.16, Personal history of COVID-19. For follow-up visits for individuals with symptom(s) or condition(s) related to a previous COVID-19 infection, see guideline I.C.1.g.1.m.”
“Multisystem Inflammatory Syndrome - For individuals with multisystem inflammatory syndrome (MIS) and COVID-19, assign code U07.1, COVID-19, as the principal/first-listed diagnosis and assign code M35.81, Multisystem Inflammatory Syndrome, as an additional diagnosis. If an individual with a history of COVID-19 develops MIS, assign codes M35.81, Multisystem inflammatory syndrome, and U09.9, Post COVID-19 condition, unspecified. If an individual with a known or suspected exposure to COVID 19, and no current COVID-19 infection or history of COVID-19, develops MIS, assign codes M35.81, Multisystem inflammatory syndrome, and Z20.822, Contact with and (suspected) exposure to COVID-19. Additional codes should be assigned for any associated complications of MIS.”
Post COVID-19 Condition: For sequela of COVID-19, or associated symptoms or conditions that develop following a previous COVID-19 infection - “Assign a code(s) for the specific symptom(s) or condition(s) related to the previous COVID-19 infection, if known, and code U09.9, Post COVID-19 condition, unspecified. Code U09.9 should not be assigned for manifestations of an active (current) COVID-19 infection. If a patient has a condition(s) associated with a previous COVID-19 infection and develops a new active (current) COVID-19 infection, code U09.9 may be assigned in conjunction with code U07.1, COVID-19, to identify that the patient also has a condition(s) associated with a previous COVID-19 infection. Code(s) for the specific condition(s) associated with the previous COVID-19 infection and code(s) for manifestation(s) of the new active (current) COVID-19 infection should also be assigned.”
The ICD-10-CM directions above instruct the coder to “assign a code for the specific symptom(s) or condition(s) related to the COVID -19 infection if known”. This information may need to be clarified or linked to support the clinical diagnosis of a COVID-related symptom or condition. A query is needed in the absence of the clarity or linkage statement.
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