Recommended Citation
King R, Ford T, Osondi-Lohrer O, Hirschtick J. Understanding Patient Experiences and Diagnostic Challenges in Long COVID Care. Presented at Scientific Day; May 20, 2026; Milwaukee, WI.
Abstract
Background/Significance:
Long COVID is characterized by persistent, heterogeneous symptoms that often lack timely recognition, contributing to delayed diagnosis and fragmented care. Understanding patient experiences with diagnosis and care pathways is critical to determining whether and how receiving a Long COVID diagnosis influences access to care, patient well-being, and perceptions of validation within the healthcare system. This study aimed to explore patient experiences with a Long COVID diagnosis and care navigation within the Advocate Health system, with a focus on identifying barriers to diagnostic equity and opportunities to improve clinical pathways.
Purpose:
The purpose of this study was to understand diagnostic challenges, identify barriers to equitable Long COVID care, and inform improvements in clinical processes that support earlier recognition and coordinated management.
Methods:
We conducted a qualitative study using semi-structured virtual interviews with adults (≥18 years) who had received a Long COVID diagnosis at Advocate Health. Participants were identified through electronic health record review and contacted by phone and via MyChart outreach. Interviews were audio-recorded, transcribed verbatim, de-identified, and analyzed using the RADaR (Rapid and Rigorous Qualitative Data Analysis) technique. Patient quotes were organized in Excel and coded, reduced, and synthesized into themes.
Results:
Thirteen patients were interviewed, ages 25–76; most were African American women insured through Blue Cross and Blue Shield. Preliminary analyses revealed several recurring themes: persistent diagnostic uncertainty, delays in symptom recognition, difficulty navigating referrals and specialty care, fragmented communication across providers, and the substantial self-advocacy required to obtain appropriate evaluation. Patients also described relief and validation once Long COVID was formally acknowledged. Ongoing RADaR analysis will further clarify how earlier diagnosis and consistent referral pathways may reduce navigation burdens and support more equitable care.
Conclusion:Patient experiences highlight the need for systematic approaches, such as clinical symptom screening tools, to promote timely diagnosis of Long COVID and to improve equity, coordination, and patient-centered care.
Presentation Notes
Presented at Scientific Day; May 20, 2026; Milwaukee, WI.
Full Text of Presentation
wf_yes
Document Type
Poster
Open Access
Available to all.
Understanding Patient Experiences and Diagnostic Challenges in Long COVID Care
Background/Significance:
Long COVID is characterized by persistent, heterogeneous symptoms that often lack timely recognition, contributing to delayed diagnosis and fragmented care. Understanding patient experiences with diagnosis and care pathways is critical to determining whether and how receiving a Long COVID diagnosis influences access to care, patient well-being, and perceptions of validation within the healthcare system. This study aimed to explore patient experiences with a Long COVID diagnosis and care navigation within the Advocate Health system, with a focus on identifying barriers to diagnostic equity and opportunities to improve clinical pathways.
Purpose:
The purpose of this study was to understand diagnostic challenges, identify barriers to equitable Long COVID care, and inform improvements in clinical processes that support earlier recognition and coordinated management.
Methods:
We conducted a qualitative study using semi-structured virtual interviews with adults (≥18 years) who had received a Long COVID diagnosis at Advocate Health. Participants were identified through electronic health record review and contacted by phone and via MyChart outreach. Interviews were audio-recorded, transcribed verbatim, de-identified, and analyzed using the RADaR (Rapid and Rigorous Qualitative Data Analysis) technique. Patient quotes were organized in Excel and coded, reduced, and synthesized into themes.
Results:
Thirteen patients were interviewed, ages 25–76; most were African American women insured through Blue Cross and Blue Shield. Preliminary analyses revealed several recurring themes: persistent diagnostic uncertainty, delays in symptom recognition, difficulty navigating referrals and specialty care, fragmented communication across providers, and the substantial self-advocacy required to obtain appropriate evaluation. Patients also described relief and validation once Long COVID was formally acknowledged. Ongoing RADaR analysis will further clarify how earlier diagnosis and consistent referral pathways may reduce navigation burdens and support more equitable care.
Conclusion:Patient experiences highlight the need for systematic approaches, such as clinical symptom screening tools, to promote timely diagnosis of Long COVID and to improve equity, coordination, and patient-centered care.
Affiliations
Advocate Aurora Research Institute