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Presentation for: AMSUS

Presented by:

Elizabeth Brill, MD, MBA, FACOG, Deputy Assistant Undersecretary for Health for Clinical Services

Norbert Bräu, MD, MBA, FAASLD, Infectious Diseases Physician and Co-Director, Post COVID Whole Health Recovery Program James J Peters VA Medical Center

David Atkins, MD, MPH, Director, Health Services Research, Office of Research and Development

Date: February 16, 2023

Strange symptoms; no active disease?

Join VA clinicians and researchers on

a journey to help Long COVID patients!

Pre-Decisional Deliberative Document

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Disclosure

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Presenters have no relevant financial or non-financial interests to disclose.

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Learning Objectives

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At the conclusion of this activity, participants will be able to:

Describe how VA is responding to Long COVID by developing standard clinical guidance and establishing a system in which Long COVID care, support, and services are accessible to all Veterans across VA no matter where they live.
Identify VA contributions to major Long COVID Research efforts and findings.
Describe the future state of Long COVID research and the Practice-Based Research Network.
Describe VA’s contributions to the interagency reports written in response to the White House Memorandum on Addressing the Long-Term Effects of COVID-19.

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How To Claim CE/CME Credit for this Meeting

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If you registered to receive continuing education credit for this activity, please visit the following link to complete the post-course evaluations:

amsus.cds.pesgce.com

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Long COVID Clinical Care Considerations

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VA defines Long COVID as symptoms or conditions that develop or worsen at least 4 weeks after a person was infected with COVID-19.

COVID-19: Lasting Impact

Al-Aly et al. Nature 2021

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Long COVID: A Patient-focused View

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Long COVID in VA

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VA has treated an estimated 700,000 Veterans diagnosed with COVID-19. An estimated 4% to 7% of Veterans who had COVID-19 will develop Long COVID.

VA is establishing a national program to provide care to Veterans, no matter where they live.

Unified approach to care, support and services
Veterans work with a team of specialists

23 programs at local VA facilities are addressing a growing need for care of the symptoms of Long COVID.

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Long COVID Community of Practice*

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Mission: Empower change and foster resilience to support a nimble and rapidly responsive health care system that successfully engages and meets the changing health needs of Veterans, Caregivers, healthcare teams and communities experiencing the burden of Long COVID.

Goal: Specify challenges and identify solutions to initiating Long COVID care.

Challenges:

Complexity of identifying or reaching patients
Paucity of literature on practice guidelines for treatment
Variability in clinic structures based on facility-level resources and capacity

*Established May 2021 by Allison Gustavson, PT, DPT, PhD, Veterans Affairs Health Care System, Minnesota

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The need for a Community of Practice also grew.

Challenges: 1. Complexity: identifying patients can be a challenge because it is a brand-new syndrome that affects so many organ systems, the combination of symptoms is unique to each patient. So, recognizing it might be a challenge. The community is working on how to conduct outreach to Veterans who might have Long COVID, unique ways of contacting them and defining what works, and what’s not helpful so you can target your outreach approach.

Challenge 2: That is the reason we developed the Long COVID guide and are developing additional guidance in collaboration with a community of specialists for Long COVID programs.

Challenge 3. The approach has been unique, that’s why there’s a community at VA attempting to identify standards. As mentioned, VA has very large teaching hospitals and very small facilities that all took a different approach. We are now working on a standardized approach to create a national program.

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Long COVID Primary Care Guide

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Equips healthcare providers with a patient-centered holistic approach to care for patients with Long COVID

Subjects covered by the Quick Guides include:

Autonomic Nervous System Dysregulation
Cognitive Impairment
Cough
Fatigue and Activity Intolerance
Mental Health (Anxiety, Depression, PTSD)

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VA clinicians and researchers were among the first health care providers to identify that secondary illness was occurring in patients who had initially recovered from COVID-19. They became part of an integrated project team, or IPT, to address the needs of patients experiencing Long COVID.

The Whole Health System Approach to Long COVID Guide is one result of that collaboration. This guide helps providers identify the most common symptoms and conditions of Long COVID and offers recommendations using a Whole Health approach to managing their care.

Whole Health is an approach that VA has been taking, and is reflected in two of VA’s Under Secretary for Health, Dr. Shareef Elnahal’s six priorities:

- Accelerate VA’s Journey to High Reliability – The first of our HRO Values is, “It’s about the Veteran” and that is what Whole Health reminds us

- The second Priority calls it out in the name of the priority: “Support Veterans’ Whole Health, their Caregivers and Survivors”

It should be noted that conventional care is one part of the Whole Health Approach. Other wellness modalities are also incorporated into the Veteran’s care. Veterans will see the providers to treat each of their symptoms, who will collaborate to create a personalized health plan that focuses on the individual Veteran’s lifestyle and needs.

Because of the paucity of information, when we developed this guide we realized we needed to share it outside of VA. So, it's on our Public Health site. You can access this and the Fact Sheet I'll talk about shortly by going to the QR code on the screen.

In the video, you saw Dr. Awan, who was a co-lead in developing this Guide. He used both traditional medicine such as blood thinners and integrated it with alternative methods to help focus on Franz's goals. One of his priorities was to be able to run as he did before. We'll follow up with that in part 2 of the video.

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Long COVID Primary Care Guide Example

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Each Quick Guide includes:

Things to Keep in Mind
Evaluation

Labs to Consider
Tests to Consider

Patient Aligned Care Team (PACT) Management to Consider
Consults to Consider
Information at-a-glance, including links to additional information if desired

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Long COVID Fact Sheet and Symptom Checker for Veterans

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While the Primary Care Guide is written in medical terms for clinicians, Veterans benefit from a fact sheet written in plain language.

The Long COVID Fact Sheet and Symptom Checker:

Defines Long COVID
Describes the symptoms
Provides space for Veterans to write down their own symptoms
Helps Veterans communicate with their clinicians and care teams

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VHA Long COVID Resources SharePoint

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Long COVID encompasses a wide range of significant health consequences after an acute COVID-19 infection.

On this page you will find resources to:

Care for Veterans with Long COVID
Establish, operate and communicate about Long COVID Programs

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Long COVID: A Patient-focused View – Part 2

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National Response: Long-Term Impacts of COVID-19

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August 3, 2022 – Reports in Response to President Biden’s Memorandum on Addressing the Long-Term Effects of COVID-19 | The White House

VA contributed to both reports
Link to main page: https://www.covid.gov/longcovid

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Federal Supports and Services for �Americans Experiencing Long COVID

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Know Your Rights
Healthcare Coverage and Access (includes VA Health Care)
Community Services and Supports
Income and Financial Assistance
Job Assistance
Housing
Food and Nutrition Support
Child Care and Early Childhood Development and Education
Education Supports
Caregiver and Family Support

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Enabling Health Care Personnel �to Improve Treatment of People Experiencing Long COVID

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Professional Organization and Federal Clinical Care Guidance for Long COVID

Development of Best Practices for Long COVID Clinical Care:

VA: Community of Practice (CoP) and Integrated Project Team (IPT) with workstreams on

Clinical Guidance and Best Practices
Standardization and Templates
Data and Metrics
Operational Planning and Resources
Education and Communication

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Enabling Health Care Personnel �to Improve Treatment of People Experiencing Long COVID

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Educational Programs:

VA: COVID-19 ECHO (Extension for Community Healthcare Outcomes)
Indian Health Services: COVID-19 ECHO

Healthcare systems equipped for Long COVID:

VA: 23 facilities with broad services of evaluation and referral
Federally Qualified Health Centers
Indian Health Services

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Enabling Health Care Personnel �to Improve Treatment of People Experiencing Long COVID

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Support for Health Care Personnel Experiencing Stress and Trauma Related to COVID-19

VA Staff Support

Employee Assistance Program
Employee Whole Health
Reduce Employee Burnout and Optimize Organizational Thriving (REBOOT)

Indian Health Services

Employee Assistance Program
Mental Health First Aid

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Mental Health, Substance Use and Bereavement Services �in the Wake of the Pandemic

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Mental Health Supports and Services

VA links:

Crisis Line (988, then 1)
Medical Center Locator
National Center for Post Traumatic Stress Disorder
COVID Coach App

Department of Defense resource links:

Military OneSource
The Psychological Health Center of Excellence

Indian Health Services links:

Stronghearts Native Helpline

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Mental Health, Substance Use and Bereavement Services �in the Wake of the Pandemic

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Substance Use Supports and Services

General

Treatment Locators
Self-Help Resources
Resources for Military Veteran, Service Members, and their Families
Indian Health Service Resources

Substance Use Support at VA

Substance Use Disorder Program Locator
Veterans Crisis Line (988)
VA Whole Health

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Mental Health, Substance Use and Bereavement Services �in the Wake of the Pandemic

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Bereavement Supports

Treatment Locators (Behavioral Health Services)
Self-Help Resources
Caring for Children Who Lost Caregivers
Survivor Benefits
Funeral Assistance

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Services and Supports for Longer-Term Impacts of COVID-19

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Future Directions

Engagement of public and private stakeholders in the development of the report and beyond

Challenges with Addressing the Longer-Term Impacts of COVID-19
The National Research Action Plan on Long COVID

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Recommendations from National Research Action Plan

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Among the most relevant recommendations:

Develop consensus on surveillance definition for Long COVID
Develop rapid implementation models for clinical trials
Standardize an approach in all Long COVID cohort research
Ensure that the Long COVID Centers of Excellence become a gold-standard patient-engaged care delivery research network
Expand voice of the patient in Long COVID research

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What Questions Are Veterans Asking About Long-COVID?

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How common is it?
How can I reduce my risk?
Will I get better and when?
What treatments will help me get better?
What causes Long COVID?

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What Makes Research on Long COVID Difficult?

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Long COVID is not one disease
Definitions of Long COVID vary (CDC, WHO)
Symptoms overlap with common underlying conditions, especially in older patients
Symptoms may not be reliably recorded in patient medical records
It can be difficult to identify who has had COVID-19

Lack of tests early in pandemic
Testing outside of VA, home testing
Asymptomatic infection

Need an uninfected control population to isolate effect of COVID

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Long COVID Research Strategy

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How common is Long COVID?

Who is most at-risk?

Does vaccination prevent Long COVID?

Do COVID treatments reduce the risk of Long COVID?

What is the natural history of Long COVID?

Population-Based Electronic Health Records (EHR) Studies

Use EHR data on all patients with COVID vs. controls

Population-Based Studies Across Different Periods

Combine EHR with chart review and symptom interview

Inception Cohort Studies

Follow patients from time of first dx with serial specimens, interviews, EHR

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Long COVID Research Strategy

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What treatments are people getting and do they work?

Are there new treatments that will improve symptoms?

Practice Based �Research Network

Use data from patients being seen in Long COVID clinics

Prospective Treatment Trials

Enroll patients with specific symptoms in trials of new treatments

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Long COVID Electronic Health Record Studies

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Ziyad Al-Aly, St. Louis VAMC and collaborators
150,000 Veterans with COVID diagnosed in VA vs. �5 million controls
Documented increased incidence of:

Multiple organ systems
Cardiovascular disease
Diabetes
Renal Disease
Mental Health conditions
Neurologic conditions

Documented effects in breakthrough infections (post-vaccination)
Documented effects of reinfections on Long COVID

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COVID Outcomes Research Collaboratory

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Build on VA EHR data, adding Medicare data and interviews
Continue analysis of mortality, suicide, mental health and costs

among patients

Conduct detailed interviews to understand experience of each patient
Create analytic cohorts of COVID-infected patients and uninfected controls for future analysis

200,000 each from first and second years of the pandemic

Progress to date: Performed initial analyses looking at:

Mortality of patients 12 months post recovery
Effects on suicide-related events
Effects of Paxlovid on Long COVID symptoms

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Cooperative Studies Program (CSP) 2028 �Inception Cohort Study

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Enroll Veterans within weeks of first infection
Follow-up for 24 months with 12 bi-monthly

symptom surveys/serial blood specimens

Characterize the trajectory of immune response, recovery

and the relationship to Long COVID

Progress to date:

Completed enrollment in late 2022 with 3,000 subjects
Identified risk factors for poor outcomes at 60 days
Examined immune response over time

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Long COVID and Million Veterans Program (MVP)

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MVP has enrolled 900,000 Veterans in the largest genomic �data repository

Over 100,000 have a documented positive COVID test in VA

VA/MVP-Department of Energy project:

VA PI: Shiuh-Wen Luoh, MD, Portland VA

Machine learning is used to:

Define specific phenotypes for Long COVID
Identify new predictors of poor outcomes
Identify role of host genetics

MVP will conduct a survey in 2023 to assess Long COVID symptoms
The Centralized Interactive Phenomics Resource (CIPHER) will be used to:

Validate different definitions of Long COVID and validity of different data sources including new ICD-10 code for Long COVID U09.9

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Long COVID Practice-Based Research Network (PBRN)

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Led by Dr. Norbert Braü and other researchers
Aim: To generate more rapid insights into the care and outcomes of VA Long COVID patients
To partner with researchers and clinicians in order to:

Involve the voice of the Veterans with Long COVID in research
Collect a uniform set of critical data during the care of Long COVID patients
Create a registry and aggregated data to address questions from front-line clinicians
Provide preliminary data to support larger research studies

As candidate treatments emerge, the PBRN will serve as platform for recruiting patients into prospective clinical trials

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Examples of Questions a PBRN Can Help Answer

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PBRN

Cycle

What is the natural history of patients in VA who present with specific symptoms?
What is yield of specific diagnostic tests?

What is a reasonable set of baseline examinations?

What supportive or therapeutic strategies are being used across VA?

Do any of them appear more effective than others?

Which symptoms are having the biggest effects on function and quality of life?
What do patients with Long COVID most want help with?
What is their experience getting care in the VA and where can it be improved?

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Acknowledgement and Contact

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Sincere gratitude to:

Veterans who have been willing to share their stories and seek Long COVID care in VA
The Long COVID Community of Practice for their forethought in designing a community to share and learn from one another
The Long COVID Integrated Project Team for working tirelessly to design clinical guidance, patient record and data tools, models of care, training and communication to support the field in providing care to Veterans
The Long-term Impacts of COVID Interagency Workgroup for working collaboratively across the Federal Government to develop the National Research Action Plan and the Services and Supports for Longer-Term Impacts of COVID-19
Long COVID Researchers who are working rapidly to help clinicians and administrators understand how Long COVID is affecting the Veteran population and how we should care for them

For more information or questions, please email: VHALongCOVIDProjectSupportTeam@va.gov

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