Article Figures & Data
Tables
Characteristics Participants n 19 Age, mean (y) 54 (36, 77)a Sex (female), % 53 (n = 10) Race, % Black/African American 6 (n = 1) White 94 (n = 18) Ethnicity, % Hispanic/Latine 11 (n = 2) Not Hispanic/Latine 89 (n = 17) Marital status, % Single 21 (n = 4) Married 74 (n = 14) Widowed 5 (n = 1) Year of first infection, % 2020 32 (n = 6) 2021 47 (n = 9) 2022 16 (n = 3) 2023 5 (n = 1) ↵a min, max.
Category Themes Expectations for primary care practitioners (PCPs) Knowledgeable practitioners
Lowered expectations
Individual assessment
EngagementExpectations for treatment Collaboration with patient
Communication across care team
Interdisciplinary knowledge sharingCategory Themes Positive experiences PCP listens
PCP is honest
PCP is supportive
Longitudinal relationship with PCPNegative experiences Dismissal
Discouragement
Inappropriate treatmentPCP = primary care physician.
Category Themes Access and coordination Lack of timely primary care
Barriers to care
Challenges with coordinating careDiagnosis and treatment Long wait times
Lack of treatment optionsCosts and payment High costs for few improvements in symptoms
Delayed care leading to emergency department admission and high costs
Challenging insurance claims process
Additional Files
SUPPLEMENTAL APPENDIX AND TABLES IN PDF FILE BELOW
- Gardner_Supplemental.pdf -
Supplemental Appendix. Interview Guide
Supplemental Table 1. Patient expectations
Supplemental Table 2. Interacting with providers
Supplemental Table 3. Navigating the health care system
- Gardner_Supplemental.pdf -
VISUAL ABSTRACT IN PNG FILE BELOW
- Gardner_Final_VA.png -
PNG file
- Gardner_Final_VA.png -
PLAIN-LANGUAGE ARTICLE SUMMARY
Original Research
Disconnect Between Expectations and Care: Long COVID Patients Seek Better Collaboration with Health Care Providers
Background and Goal: Post-COVID-19 Conditions or “long COVID,” is defined as the continuation or development of new symptoms three months after initial SARS-CoV-2 infection, with symptoms lasting at least two months with no other explanation. For many patients with long COVID, primary care is the first point of interaction with the health care system. Beyond patients’ expressions of stigmatization and disempowerment, less is known about their perspectives and expectations for the quality of long COVID care overall. This study aimed to examine the expectations and experiences of primary care patients seeking treatment for long COVID.
Study Approach: Twenty interviews were conducted between 2022 and 2023 with primary care patients from a long COVID triage clinic at the University of Utah. A phenomenological framework, which focuses on understanding and describing participants’ lived experiences and perceptions through open-ended, flexible questioning, guided the analysis. The semistructured interviews were recorded, transcribed, and analyzed using inductive qualitative content analysis, a method for identifying themes and patterns in the data.
Main Results:
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19 interviews were analyzed. Participants averaged 54 years old, and 53% were female. Most participants were infected with COVID-19 for the first time in 2020 (32%) or 2021 (47%).
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Patient Expectations: Participants described two categories of expectations: those for their practitioners and those for treatment. Patients expected their primary care practitioners to be knowledgeable about post-COVID conditions, attentive to their individual condition, and to engage in collaborative processes for treatment.
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Patient Experiences: Patients described two types of experiences. First, interactions with practitioners were perceived as positive when practitioners were honest and validating, and negative when patients felt dismissed or discouraged. Second, patients described challenges navigating the fragmented U.S. health care system when coordinating care, treatment and testing, and payment.
Why It Matters: The study results highlight a disconnect between the expectations and experiences of long-COVID patients within the U.S. health care system. Despite facing numerous barriers and frustrations, patients show a desire to collaborate with their health care providers to improve treatment outcomes. Primary care practitioners and other health care professionals can better align patients’ experiences with their expectations by listening to their concerns, validating their symptoms, and advocating for their needs. These actions are essential for delivering patient-centered, effective care, and ultimately improving health outcomes for long COVID patients.
Challenges in Receiving Care for Long COVID: A Qualitative Interview Study Among Primary Care Patients About Expectations and Experiences
Elena Gardner, MPH, et al
University of Utah Family and Preventive Medicine, Salt Lake City, Utah
Visual abstract showcasing key findings from this study:
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