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Health Services Research & Development

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2023 HSR&D/QUERI National Conference Abstract

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1184 — Complexity and challenges of the clinical diagnosis and management of long COVID: A qualitative study of electronic health records

Lead/Presenter: Ann O'Hare
All Authors: OHare AM (VAPSHCS), Elizabeth K. Vig MD MPH (VA Puget Sound Health Care System (VAPSHCS) and University of Washington) Theodore J Iwashyna (Johns Hopkins University) Alexandra Fox (VAPSHCS) Janelle S. Taylor PhD (University of Toronto) Elizabeth M. Viglianti (Ann Arbor VA and University of Michigan) Catherine R. Butler (VAPSHCS and University of Washington) Kelly C. Vranas (Portland CIVIC and OHSU) Mark Helfand (Portland VA and OHSU) Anaïs Tuepker PhD MPH (Portland VA and OHSU) Shannon M. Nugent PhD (Portland VA and OHSU) Kara A. Winchell (Portland VA and OHSU) Ryan J. Laundry (VAPSHCS) Barrett Bowling (Durham VA and Duke) Denise M. Hynes (Portland VA, OHSU and Oregon State University) Matthew L. Maciejewski (Durham VA and Duke University) Amy S.B. Bohnert (Ann Arbor VA and University of Michigan) Emily R. Locke MPH (VAPSHCS) Edward J. Boyko (VAPSHCS) George N. Ioannou (VAPSHCS)

Objectives:
There is growing recognition of the post-acute sequelae of SARS-CoV-2 infection (long COVID). However, little is yet known about the clinical diagnosis and management of long COVID within health systems. Our objective was to describe dominant themes pertaining to the clinical diagnosis and management of the post-acute sequelae of SARS-CoV-2 in the electronic health records (EHR) of patients with a diagnostic code for long COVID (ICD-10 U09.9).

Methods:
We conducted a qualitative study of text in the EHRs of a national random sample of 200 patients receiving care in the Department of Veterans Affairs (VA) with documentation of a positive PCR test for SARS-CoV-2 between February 27, 2020, and December 31, 2021, and an ICD-10 diagnostic code for long COVID between October 1, 2021, and March 1, 2022 (the code was implemented in October 2021). We designed a text word search to capture documentation pertaining to the clinical diagnosis and management of the post-acute sequelae of SARS-CoV-2 in patients’ EHR which we then analyzed qualitatively using inductive content analysis.

Results:
The average age of the 200 randomly selected cohort members at the time of their first positive PCR test for SARS-CoV-2 in VA records was 60 (±14.5) years. Most (86.5%) were male, 68.0% were identified as White and 22.5% as Black or African American. The median time from study baseline to the earliest documentation of a diagnostic code for long COVID was 287 (interquartile range 48-385) days. Two dominant themes were identified in qualitative analysis of documentation in patients’ EHRs pertaining to the long-term sequelae of SARS-CoV-2: 1) clinical uncertainty: describing the challenges of distinguishing the signs and symptoms of long COVID from those related to other health conditions, especially in medically complex patients with limited functional reserve; and 2) care fragmentation: describing a siloed approach to care that was poorly coordinated with other care processes and could be burdensome to patients.

Implications:
Our findings highlight the complexity of characterizing long COVID in real-world clinical settings and the challenges of caring for patients who have, or are suspected of having, this condition.

Impacts:
Our findings argue for caution in interpreting the results of studies of long COVID based on structured administrative and clinical data. They also suggest the need for a more person-centered and integrative approach to the care of Veterans with, or suspected of having, long COVID.