Multisystem Inflammatory Syndrome in Children (MIS-C): Information for Healthcare Providers About Talking with Families and Caregivers

Key Points

Context

Surveys and in-depth interviews were conducted with a sample of healthcare providers in fall 2020 and spring 2021 to determine healthcare providers’ key questions and resource needs related to MIS-C. The sample included physicians, nurse practitioners, and physician assistants working in outpatient (primary care and urgent care) or hospital (emergency and inpatient care) settings. The key questions of interest to healthcare providers included:

  • How to discuss the risk of MIS-C with patients and families?
  • What epidemiologic data are available about MIS-C?
  • What are signs and symptoms that indicate MIS-C?
  • What is the clinical management for MIS-C?
  • What is the prognosis for someone diagnosed with MIS-C?
  • What follow-up care is required?

About MIS-C

MIS-C is a rare but serious complication associated with SARS-CoV-2, the virus that causes COVID-19. MIS-C occurs in children, adolescents, and young adults and is characterized by inflammation across multiple body systems.

Risk Factors

  • The main risk factor for developing MIS-C is being infected with SARS-CoV-2, the virus that causes COVID-19.
  • MIS-C symptoms generally appear 2–6 weeks after infection, and it is common that children with MIS-C would have had no or few symptoms of COVID-19.
  • Most children with MIS-C do not have any reported underlying medical conditions, but of the children with MIS-C who do report an underlying medical condition, obesity is the most common.

Incidence

  • Studies have reported that MIS-C has occurred in 1 of approximately 3,000external icon to 4,000external icon children and adolescents who had SARS-CoV-2 infection.
  • In the United States, incidence of MIS-C was highest among disproportionally affected racial and ethnic groups of children and adolescents, including non-Hispanic Black and Hispanic or Latino children and adolescents. See the CDC COVID Data Tracker.
  • Throughout the COVID-19 pandemic, trends in MIS-C cases have generally followed trends in reported daily COVID-19 cases over time. Peaks in MIS-C cases generally follow peaks in COVID-19 cases by about a month.

Symptoms

  • In addition to fever, children with MIS-C commonly present with abdominal pain, vomiting, diarrhea, rash, conjunctivitis, and hypotension.
  • Children should be evaluated by a medical provider immediately if these symptoms appear, especially in a child who had, or was exposed to someone with, COVID-19, within the prior 2–6 weeks.

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Handout: How to Recognize MIS-C: English pdf icon[301 KB, 1 page] | Español pdf icon[1 página 201 KB]

During Hospitalization

Once a child has been diagnosed with MIS-C, they will likely be hospitalized and receive care from a variety of specialists. Some children will need to be treated in the intensive care unit (ICU) to closely monitor symptoms.

Hospital Course

  • Multiple pediatric specialists (e.g., cardiologists, critical care specialists, hematologists, infectious diseases specialists, and rheumatologists) often participate in MIS-C management.
  • Children with MIS-C will have blood tests that identify markers of inflammation; these tests are usually repeated several times to ensure a response to treatment.
  • Some children require respiratory and blood pressure support during their ICU stay.
  • Children with MIS-C will likely have at least one echocardiogram performed during their hospitalization, and evidence of inflammation involving the heart is common on echocardiogram and/or blood tests.

Treatment

  • Treatment for MIS-C continues to evolve and includes supporting the medical needs of each patient (such as management of shock), as well as the use of immune-modifying medications.
  • Clinical management will generally include intravenous immunoglobulin (IVIG), steroids, or other medications that decrease inflammation and affect the immune system.
  • Management of MIS-C often also includes medications that reduce the risk of blood clot development.

paper icon Download or Print
Handout: After MIS-C Diagnosis: English pdf icon[301 KB, 1 page] | Español pdf icon[1 página 201 KB]

Follow-Up and Long-Term Effects

Specialists will generally monitor children who have had MIS-C before they are approved to return to certain activities such as sports.

Care After Hospitalization

  • Evaluation and testing after hospitalization are based on the presentation and clinical course of each child with MIS-C.
  • Pediatric cardiology follow-up is generally recommended, and most children will have a follow-up echocardiogram after hospitalization for MIS-C.
  • Pediatric rheumatology follow-up is recommended if a child received steroids or immune modulators during hospitalization.
  • Follow-up with the child’s primary care provider is important.
  • A conversation between the patient, their guardian(s), and the clinical team or a specialist should occur to assist with decisions about COVID-19 vaccination after MIS-C.

Activity Restriction

  • Exercise and strenuous activity are generally limited until cleared by a cardiologist, which may take several months.

Long-Term Outcomes

  • Most patients with MIS-C have had good outcomes with no significant sequelae one year after diagnosis.
  • Studies evaluating the long-term effects of MIS-C are ongoing.
  • Limited available data show that elevated inflammatory markers will decrease to a normal range and abnormal echocardiogram findings will resolve 1–4 weeks after hospitalization in most patients.
  • Most organ-specific complications resolve by 6 months; complications persisting at 6 months have included muscular fatigue, abnormalities on neurologic exam, anxiety, and emotional difficulties.
  • For patients who do experience persistent symptoms, healthcare providers can learn more about longer term effects of COVID-19.
Page last reviewed: December 14, 2021