In for the Long Haul Understanding the needs

In for the Long Haul: Understanding the needs of people living with post COVID-19 Syndrome Rasika Karnik, MD Assistant Professor of Medicine, University of Chicago Department of Medicine Director Post-COVID Recovery Clinic May 11 th, 2021 Midwest AIDS Training + Education Center

Disclaimer This program is supported by the Health Resources and Services Administration (HRSA) of the U. S. Department of Health and Human Services (HHS) as part of an award totaling $3, 994, 961. 00 with 0 percentage financed with nongovernmental sources. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS or the U. S. Government. Dr. Renslow Sherer for sharing slides Midwest AIDS Training + Education Center

Financial Disclosure § None Midwest AIDS Training + Education Center

Learning Objectives § Define Post-Acute Sequelae SARS-COV 2 § Describe Clinical Characteristics of Post-Acute Sequale SARS-COV 2 § Provide a framework for treatment and support of Post-Acute Sequale SARSCOV 2 § Describe ongoing research endeavors for people living with post COVID-19 syndromes § Describe my clinical experience Midwest AIDS Training + Education Center

Learning Objectives § Define Post-Acute Sequelae SARS-COV 2 § Describe Clinical Characteristics of Post-Acute Sequale SARS-COV 2 § Provide a framework for treatment and support of Post-Acute Sequale SARSCOV 2 § Describe ongoing research endeavors for people living with post COVID-19 syndromes § Describe my clinical experience Midwest AIDS Training + Education Center

Long COVID = Long Hauler = Chronic Covid= Post Acute Sequelae of COVID-19 (PASC) Preliminary reports indicate some patients may develop a so-called “post-acute COVID-19 syndrome, ” in which they experience persistent symptoms after recovering from their initial illness. The syndrome appears to affect those with mild as well as moderate-to-severe disease. The incidence, natural history and etiology of these symptoms is currently unknown -CDC Often referred to as “Long COVID”, these symptoms, which can include fatigue, shortness of breath, “brain fog”, sleep disorders, fevers, gastrointestinal symptoms, anxiety, and depression, can persist for months and can range from mild to incapacitating. In some cases, new symptoms arise well after the time of infection or evolve over time. -NIH Midwest AIDS Training + Education Center

Varying Definitions of When PASC Starts § OFID: Framework of PASC estimated 3 weeks post infection § CDC JAMA: Proposed Framework of Timeline: suggests 4 weeks post infection § Guidelines from the UK's National Institute for Health and Care Excellence (NICE), the Scottish Intercollegiate Guidelines Network (SIGN), and the Royal College of General Practitioners (RCGP). § Their breakdown is as follows: • Acute COVID-19: signs and symptoms of COVID-19 for up to 4 weeks. • Ongoing symptomatic COVID-19: signs and symptoms of COVID-19 from 4 to 12 weeks. • Post-COVID-19 syndrome: signs and symptoms that develop during or after an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis https: //www. nice. org. uk/guidance/NG 188 Open Forum Infect Dis. 2020 Oct 21; 7(12): ofaa 509. doi: 10. 1093/ofid/ofaa 509. PMID: 33403218 JAMA. 2020 Dec 8; 324(22): 2251 -2252. doi: 10. 1001/jama. 2020. 22717. PMID: 33206133. Midwest AIDS Training + Education Center

Diagnosis of PASC § Ongoing symptoms and one of the following: • Prior positive PCR test or antigen test • Positive Antibody Test • A good story (“ I was in Italy 2/2020 and one week after coming home…”) Midwest AIDS Training + Education Center

• 30 -76% of patients continue to have symptoms 3 -9 months post acute infection in follow up interviews • Seen in hospitalized and nonhospitalized patients • Most studies that have been published thus far are relatively small, single center cohorts Location Number of pts Long. Covid Main symptoms Gender Wuhan 1733 *hospitalized 76% 3 mths Fatigue (63%) Sleep disturbance (26%) M>F Univ of Washington 177 *150 outpatient 30% 9 mths Fatigue (13. 6%) F>M United Kingdom 4182 13% 4 wks 4. 5% 8 wks 2. 3% 12 wks Fatigue Headache Anosmia F>M Huang C, Huang L, et al. Lancet. 2021 Jan 16; 397(10270): 220 -232. Steves et. al med. Rxiv 2020. 19 Midwest AIDS Training + Education Center

Midwest AIDS Training + Education Center

Midwest AIDS Training + Education Center

Unclear who can get this, what symptoms they can have and ultimately what will happen Locatio n Number of pts Long. Covid Main sympto ms Gender Wuhan 1733 *hospitaliz ed 76% 3 mths Fatigue (63%) Sleep disturbanc e (26%) M>F Univ of Washingto n 177 *150 outpatient 30% 9 mths Fatigue (13. 6%) F>M United Kingdom 4182 13% 4 wks 4. 5% 8 wks 2. 3% 12 wks Fatigue Headache Anosmia F>M Midwest AIDS Training + Education Center

Underlying Mechanism Theories • • • Organ damage from the acute infection phase Persistent inflammation Auto immunity Low level of continued virus in the body Inadequate antibody response Overlap with Chronic Fatigue Syndrome (also known as Myalgic Encephalitis) Midwest AIDS Training + Education Center

Learning Objectives § Define Post-Acute Sequelae SARS-COV 2 § Describe Clinical Characteristics of Post-Acute Sequale SARS-COV 2 § Provide a framework for treatment and support of Post-Acute Sequale SARS-COV 2 § Describe ongoing research endeavors for people living with post COVID-19 syndromes § Describe my clinical experience Midwest AIDS Training + Education Center

§ Listen, listen § Encourage continuity of care and staying engaged with HCPs, maintaining symptom diaries § Symptom based diagnostics and evaluation-r/o other disease processes § Referral to appropriate specialists, including rehabilitation services § Counselling and peer support groups (local, national, international) § Body Politic (wearebodypolitic. com) (>11, 000 members) § Referral to Post-COVID Clinics § Post-COVID Care Centers — Survivor Corps § Patience with the health care system and science § Messaging to the general public to avoid infection § Get vaccinated when you can § Follow CDC guidelines until that time Midwest AIDS Training + Education Center

Learning Objectives § Define Post-Acute Sequelae SARS-COV 2 § Describe Clinical Characteristics of Post-Acute Sequale SARS-COV 2 § Provide a framework for treatment and support of Post-Acute Sequale SARSCOV 2 § Describe ongoing research endeavors for people living with post COVID 19 syndromes § Describe my clinical experience Midwest AIDS Training + Education Center

Midwest AIDS Training + Education Center

§ NIH announced funding for a nationwide Recovery Cohort Feb 2021 § National COVID Cohort Collaborative (N 3 C) § Open science community platform that receives De-identified national patient data and allows for large scale analysis (>1. 5 million cases) § Looking for patterns § Starting to look at PASC § Collaborative Cohort of Cohorts for COVID-19 Research § Pre-existing cohort of patients across 14 different studies (>50, 000 adults) Midwest AIDS Training + Education Center

Developed by a group of citizen scientists who were diagnosed with COVID early in the pandemic Midwest AIDS Training + Education Center

• • Included 3762 individuals, predominantly Caucasian females living in the US (ages 30 -60) More than half never sought hospital care 8% were admitted to the hospital 2, 464 respondents reported symptoms lasting > 6 months • Symptoms have lead to reduced work hours, 22% stopped working Study flaw: self reported, no confirmed diagnosis, unable to r/o other causes Midwest AIDS Training + Education Center

Learning Objectives § Define Post-Acute Sequelae SARS-COV 2 § Describe Clinical Characteristics of Post-Acute Sequale SARS-COV 2 § Provide a framework for treatment and support of Post-Acute Sequale SARSCOV 2 § Describe ongoing research endeavors for people living with post COVID-19 syndromes § Describe my clinical experience Midwest AIDS Training + Education Center 21

Personal Experience § Seeing patients since 11/2020 § Initially, the visits were overwhelming with many symptoms to address § Learn how to prioritize symptoms based on subjective severity and red flag signs § Breathlessness and decreased exercise tolerance, palpitations, brain fog, sleep disturbances most common § Plans are tailored for their specific needs § Challenging to keep up to date on updates via mainstream media, published research § Opportunities: § Engage with other members of the University of Chicago, medical community § This talk Midwest AIDS Training + Education Center 22

Summary § COVID-19 can lead to prolonged illness and persistent symptoms, even in young patients with no underlying medical history that were never hospitalized § No universally accepted agreed upon definition or criteria § Much is unknown about how COVID-19 affects people over time, but research is underway § More time and research needed to understand the underlying causative mechanisms, clinical course and treatment options § Validation, support and continued education needed to help our patients Midwest AIDS Training + Education Center 23

Thank you! Questions? Rasika Karnik MD rkarnik@uchicago. edu Midwest AIDS Training + Education Center 24