The COVID-19 “long-hauler”syndrome – facts, fallacies and theunknownSunday, June 6 12N – 1 pm CDT

ModeratorLouis Weinstein, MDImmediate Past Chair, AMA SeniorPhysicians Section Governing Council 2020 American Medical Association. All rights reserved.

We takeEducationharassment andThe AMA GME CompetencyProgramconflicts of interest seriously.Visit learn more.Conduct Liaison for this meeting:Lauren [email protected](312) 464-4926Confidential 398-1496 2020 American Medical Association. All rights reserved.

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Speakers’ DisclosureThe content of this activity does not relate to anyproduct of a commercial interest as defined bythe ACCME; therefore, there are no relevantfinancial relationships to disclose at this time. 2020 American Medical Association. All rights reserved.

ObjectivesUpon completion of this activity, the physician willbe able to: Define the term long-hauler for COVID-19 post viral syndrome. Assess the range of long-lasting symptoms patients have reported. Describe how long hauler syndrome specifically affects the seniorpopulation. Relate experiences, symptoms, and successful practices of thosetreating these patients. Compare the differences between older and younger peopleexperiencing long-hauler syndrome 2020 American Medical Association. All rights reserved.

SpeakerAluko A. Hope, MDAssociate Professor, Pulmonary and CriticalCare, Oregon Health and Sciences University 2020 American Medical Association. All rights reserved.

Understanding & Improving COVID-19 RecoveryAssociate Professor, Pulmonary/Critical Care, Oregon Health and Science University(OHSU)Adjunct Associate Clinical Professor of Medicine, Division of Critical Care Medicine,Montefiore-Einstein 2020 American Medical Association. All rights reserved.

Outline 2020 American Medical Association. All rights reserved. Pathophysiology ofPACS Epidemiology Care Models Challenges Summary

Case AB with Acute COVID-19 55 year old womanPMHx: hypertension, pre-diabetes, obesity, depressionWorks as an elementary school teacherIn May 2020, PCR COVID-19Fever, headache, anosmia, difficulty breathing, and chest pains,myalgia Admitted to hospital 6 days into symptoms Psat 92% on with bilateral reticular infiltrates Remdesivir x 5 days: 200mg x 1 100mg x 4 Decadron 6mg IV x 5 days Treated with NC 2-3 L 2020 American Medical Association. All rights reserved.

Defining PASC Definition is still evolving Acute COVID-19 lasts 4weeks Persistent symptoms and/ordelayed or long-termcomplications beyond4weeks Subacute/ongoingCOVID-19 Chronic/post-COVID-19 2020 American Medical Association. All rights reserved.

Pathophysiology of PASCDirectmechanisms Persistent immune activation or immune dysregulation? Persistent or restricted viral replication?Indirectmechanisms Residual organ damage from acute infection? Unmasking of underlying comorbidities after infection? Post-hospital or post-ICU syndromes 2020 American Medical Association. All rights reserved.

COVID-19 symptoms persist in outpatients 292 adults tested at outpatient sites at 14academic centers in 13 U.S. cities Telephone interview regardingsymptoms 94% reported 1 symptom at initialtesting 35% not at usoh at interview (median 16 daysfrom initial testing) Cough, fatigue and shortness of breath weremost common symptoms to persist Older age and multi-morbidity were factorsassociated with persistent symptomsTenforde MW et al. MMWR Morb Mortal Wkly Rep 2020 2020 American Medical Association. All rights reserved.

Sixty-Day Outcomes Among Patients Hospitalized With COVID-19 Observational cohort studyMortality and rehospitalization (total 1250) Hospitalized patients admitted withCOVID-19 March-July 2020Died in the 60 day after discharge, n (%)84 (6.7)Rehospitalization, n (%)189 (15.1) 38 hospitals in Michigan 1250 survived/1648 eligible 975 (78.0%) discharged home 158 (12.6%) subacute rehab 2020 American Medical Association. All rights reserved.New or Worsened Symptoms (total 488)Persistent Symptoms159 (32.6)New or worsening symptoms92 (18.9)Continued loss of taste and/or smell64 (13.1)Cough75 (15.4)SOB/chest tightness/wheezing81 (16.6)Difficulty ambulating due to chest problems44 (9.0)Oxygen use32 (6.6)Breathlessness walking up stairs112 (23.0)New use of CPAP or other breathing machinesduring sleep34 (7.0)

Long-term consequences of discharged COVID-19 patientsNo O2(n 439)Supplemen HFNC, IMVtal O2or NIV(n 1172)(n 122)Age57 (46-65)57 (48-65)56 (48-65)Women51%48%36%Fatigue 81%)mRCDyspneaScore 1score102/425(24%)277/1079(26%)40/111(36%)Anxiety ordepression98/425(23%)233/1081(22%)36/111(32%) 8/83(22%)48/164(29%)48/86(56%) 1733 adults underwent follow-up questionnaires,physical exam, 6mwt 516 chest CT, PFTHospital LOS, median (IQR) 14·0 (10·0–19·0)days Time from symptom onset to follow-up visit,median (IQR) 186·0 (175·0–199·0) days Fatigue or muscle weakness, anxiety ordepression were the most common symptoms The risk of presenting 1 symptom Higher in HFNC/IMV/NIV (OR 2·42, 95% CI 1·15–5·08)Women more likely to report 1 symptom (81%versus 73% in men, p 0.0046) Risk of dyspnea higher in HFNC/IMV/NIV OR 2·15, 95% CI 1·28–3·59 2020 American Medical Association. All rights reserved.

CharacterizingLong COVID inanInternationalCohort: 7Months ofSymptoms andTheir Impact BodyPolitic The Patient-Led Research group viasocial media and digital tools likeSlack. 3,752 participants from 56 countries. Questionnaire include 205 symptoms. Fatigue, PEM, cognitivedysfunction were the mostcommon symptoms Relapses with exercise,physical/mental activity, stress Average of about 13 symptomsDavis H et al. Medrxiv. 5 April 2021. doi: (unpublished)16 2020 American Medical Association. All rights reserved.

Long Covid Symptoms Most Common: Fatigue & dyspnea GI: Abd pain, diarrhea, wt loss Neurocognitive: Brain fog, HA,insomnia, anosmia, dysautonomia,ageusia, vertigo, chronic fatigue syndrome(ME), stroke, neuropathy MS: Myalgias, arthralgias, fatigue Behavioral Health: Depression, anxiety,PTSD Pulm: dyspnea, interstitial thickening,fibrosis, Cardiac: chest pain, palpitations and/ortachycardia, mycarditis, cardiomyopathy,arrhythmias, thromboembolism 2020 American Medical Association. All rights reserved. Skin: Rashes, COVID toe, alopecia Socioeconomic: Unemployment,impaired daily function and mobility Other: Fevers, Chills, mast cell activationsyndrome

Case Update: PASC Course3 months after COVID-19: Chest tightness Palpitations Dizziness and lightheadedness Dyspnea, 2 block exercise tolerance limited also by palpitations Brain fog Decreased attention/concentration Memory challenges – repeating herself, feels emotionally labile Executive functioning impairment Anxiety and post-traumatic stress symptoms 2020 American Medical Association. All rights reserved.

Why a post-COVID-19 clinic?To improve organizational capacity and infra-structure for theclinical care of survivors of COVID-19 illnessTo provide diagnosis and assessment services for COVID-19survivors with lingering symptomsTo provide care management and coordination for chronicsymptoms in survivors of COVID-19 illnessTo provide training and education in the management of COVID19 prolonged symptoms 2020 American Medical Association. All rights reserved.

What Happens at a post-COVID rySocialWorkPeerSupportA Hub ofStructuredAssessmentsacross multiplehealth domainsCardiorespiratoryEvaluation 2020 American Medical Association. All rights reserved.Neuropsychology withinNeurology orPsychiatry

Patient Flow through Long COVIDClinicInternal LIPsC4 Self ReferralLongCOVIDHUBPlan ofCarePCMH: Plan of Care for PCPto managePCP/PCMH manages allspecialty needs in scopeLC SPOKE: DiagnosticsExternal LIPsLC SPOKE: Defined Specialtyneed out of scope of primarycare management 2020 American Medical Association. All rights reserved.

Eval & Mgt: SOBSymptoms Dyspnea, sob with exertionDry coughCoughing with phlegm 2020 American Medical Association. All rights reserved.Evaluation PFT- Spirometry, LungVolumes, DLCOCXRChest CT6MWTSPPB2 minute step testTreatment OxygenSteroids?Inhaled corticosteroidsLRTAPulmonaryrehabilitationLung transplantation

Eval & Mgt : Fatigue and Post-Exertional MalaiseSymptomsEvaluation Severe exhaustion afterminimal exertionProlonged postexertional malaise andrecoveryLack of restorativesleepWeighed down by leadweight all day“Crash” after having a“good day.” 2020 American Medical Association. All rights reserved. Assess co-morbidsAssess sleepAssess deconditioningAssess impact ofmental activitiesPulmonary workup:CXR, CT (if CXR abnl),PFTsDirected serologic eval:CBC, CMP, TSH, VitB12 / D, Iron/Ferritin,ESR, CRP, Cortisol,etc.Treatment Treat co-morbid issuesPhysical therapy4Ps to break self-reinforcingcycle of fatigue – Posture,Pace, Plan, PrioritizeLeverage energy windowMedications?Support SDoHMind-body exercises

Eval & Mgt: Neuropyschiatric ManifestationsSymptomsEvaluationTreatment Brain fogDifficulty concentratingLosing train of thoughtShort term memory lapsesWord finding xietyPost traumatic stresssymptoms 2020 American Medical Association. All rights reserved. Screen for psychiatric comorbidities (GAD-7 /PHQ-9)Assess sleep (ISI)Neuropsychology referralfor complexpresentations ofneurological, sleep, BHBrain imaging forheadaches with “redflags” OT / Speech for brain fogAvoid overstimulatingenvironments and tasks withdivided attentionTreat headachesTreat psychiatric conditionsHydration/nutritionrecommendations

EvaluationCaseUpdate:PASCEvaluation 2020 American Medical Association. All rights reserved. Symptom Assessment Endorsed 6 symptoms: fatigue, breathlessness,sleepiness, anxiety, depression, appetite changes GAD-7 score 21 PHQ-9 score 10 Post Traumatic Stress questionnaire – difficult tocomplete because of multiple “stressful events”Interventions Offered: Neuropsychology/Psychology Physical Therapy Peer Support group for Women COVID-19 survivors

Challenges in PASC care Dearth of literature on health disparities in PASC Testimonial Injustice Hermeneutic Injustice 2020 American Medical Association. All rights reserved.

Resisting Injustice in PASC Peer support for patients/caregiversCare coordinationSkillful communicationPatient and family engagement in research 2020 American Medical Association. All rights reserved.

SpeakerShannon G. Caspersen, MDAssistant ProfessorWeill Cornell Medical College/New YorkPresbyterian Hospital28 2020 American Medical Association. All rights reserved.

38 year old female psychiatrist No chronic medical conditions Past Medical Hx of preeclampsia with HELLP (despiteabsence of risks factors), some unusual IDoccurrences Active: full-time practice, exercise 5 days/week,many volunteer activities, busy mom, etc Chronic fatigue/fibromyalgia/chronic Lyme/migraine“skeptic” Anti-Dr. Google crusader 2020 American Medical Association. All rights reserved.

TimelineMonday, March 9, 2020-Symptoms of acute covid begin (malaise, myalgias, sore throat)-miss a day of work (rare), begin telemedicine with all patients-see primary care and ED physicians via telemed over the course of theweek-finally instructed to come to ER on Friday, March 13 due to chest pain anddyspnea-labs in ER were significant only for lymphocytopenia. EKG and CXR wnl-permission obtained from Department of Public Health to administer acovid test (neg)-acute symptoms resolve after about 10 days 2020 American Medical Association. All rights reserved.

“Phase I”: March-July 2020 Neurological: numbness and tingling in extremities, cold feet (socksneeded in 90 ), tremor, new-onset migraines, visual disturbance, mildshort-term memory and word-finding difficulties CV: dyspnea on mild exertion, HR increase 2x-3x going from supine toerect position, dizziness and pre-syncope when erect General: extreme fatigue, requiring 10 hrs/sleep per night, generalmalaise, neck pain Lab findings: April, May, June wnl Functional status: able to see patients full time (essentially supine),manage remote kindergarten 2020 American Medical Association. All rights reserved.

“Phase II”: Diagnosis and Treatment Reading about other patients on Body Politik, who have similarsymptoms and are being diagnosed with POTS/dysautonomia. Perform my own “quick and dirty” POTS test: positive See my primary doctor, tells me before doing a physical exam that Ihave “pandemic anxiety” and “deconditioning” Performs orthostatic vitals, proclaims he has “never seen someone soorthostatic” Referred to cardiologist: EKG, echo, labs wnl, orthostatics consistentwith POTS 2020 American Medical Association. All rights reserved.

Phase II continued: Pharmacology:-fludricortisone to retain salt and expand blood volume-Na and K capsules-ivadrabine (b-blocker-like rate control) Lifestyle Modifications:-supine living-fluid intake (2-3L/day)-reduce sugar, red meat, cholesterol, no alcohol Exercise:-Dallas Protocol (8 months of supine erect exercise) 2020 American Medical Association. All rights reserved.

“Phase III”: Flares and Functioning Still sleeping 9-12 hours per night Still following Dallas protocol, but due to flares, have had to repeatmonths and am only on month 4, 11 months later Still on medications, but have reduced doses Able to cook, clean, go out to dinner, pick up daughter from school HR still goes to 150s occasionally “flares” of systemic symptoms, usually triggered