Illness Experiences of Veterans Reporting Long-Term Symptoms or Health Challenges from COVID-19: Results from the VA COVID-19…, 2025, O’Hare et al.

[Chandelier]

Illness Experiences of Veterans Reporting Long-Term Symptoms or Health Challenges from COVID-19: Results from the VA COVID-19 Observational Research Collaboratory

Spoiler: Authors

O’Hare, Ann M.; Montague, Kara; Hynes, Denise M.; Fox, Alexandra; Nye, Vivian; Iwashyna, Theodore J.; Card, Hannah; Tuepker, Anais; Helfand, Mark; Vig, Elizabeth K.; Butler, Catherine R.; Taylor, Janelle S.; Viglianti, Elizabeth M.; Jones, Barbara E.; Knight, Sara J.; Eaton, Tammy L.; Bowling, C. Barrett; Maciejewski, Matthew L.; Bohnert, Amy S.; Ioannou, George N.; Nugent, Shannon M.

Abstract​

Background​

Our understanding of the illness experience of long COVID comes mostly from studies conducted among long COVID online communities and support groups or participants in cohort studies of COVID-19.

Objective​

To elicit the illness experiences of patients receiving care in real-world clinical settings experiencing ongoing symptoms or health challenges from COVID-19.

Design and Participants​

Qualitative interview study conducted between July 2022 and April 2024 among 39 patients identified in health system data who indicated that they were experiencing ongoing symptoms or health challenges from COVID-19.

Approach​

Qualitative analysis of participants’ post-COVID-19 illness experience from one-time semi-structured in-depth interviews.

Key Results​

Participants’ mean age was 63.6 years (SD 13.2 years), 8 (20.5%) were identified in VA data as female, 6 (15.4%) as Black, 29 (74.4%) as White, and 2 (5.1%) as Hispanic. Interviews were conducted an average of 23 months after the initial COVID infection (range 8 to 49 months) and lasted an average of 87 (SD 27.3) minutes.
Participants varied in their embrace of long COVID as an organizing framework for their post-COVID illness experience, reflecting two dominant themes:
(1) Interpreting complexity: Study participants often had difficulty disentangling the long-term effects of COVID-19 from those of their other health conditions and normal aging.
Their baseline health status, post-COVID illness trajectory, and expectations of aging shaped how they made sense of their illness experience;
(2) Seeking answers: Though often fraught with uncertainty, participants’ interpretation of their post-COVID illness experience was shaped more by clinical encounters and diagnostic evaluation than by interactions with others with relatable illness experiences.

Conclusions​

Our findings illuminate the challenges of applying a broadly defined diagnostic category lacking condition-specific markers in real-world clinical settings and the role of health systems and providers in the ongoing social construction of long COVID.

Web | DOI | PDF | Journal of General Internal Medicine

 

[rvallee]

(1) Interpreting complexity: Study participants often had difficulty disentangling the long-term effects of COVID-19 from those of their other health conditions and normal aging.
Their baseline health status, post-COVID illness trajectory, and expectations of aging shaped how they made sense of their illness experience;
(2) Seeking answers: Though often fraught with uncertainty, participants’ interpretation of their post-COVID illness experience was shaped more by clinical encounters and diagnostic evaluation than by interactions with others with relatable illness experiences.

This is extremely out of touch with reality. There is a huge echo chamber problem in health care, they don't pay attention to anything they... don't pay attention to. Pretty much one of the loudest things coming out of LC is precisely how health care is mostly useless and patient communities are far more useful simply because they get fewer things wrong. So far the medical profession has not actually added a single bit of useful knowledge, let alone offered any solution.

It's really hard to see things improving until this fundamental flaw is fixed. And it's unfixable because the people whose flaws need to be fixed decide not to and can't be forced to. Our health care systems are much closer in constitution to old aristocracies than to a democratic system, where the idea of having "the people" decide anything is considered so laughable it can't happen as long as the aristocracy decides everything.

Because there are people who can do this and not fall for the chamber echos, but always it's the ones who get it the most wrong who get elevated. Much like an old aristocratic system, where people don't get elevated based on merit because that would be a threat to those who hold most of the influence and prefer pliable lackeys who will never rock any boat.

Or it might as well be the case. I know it's not the case. And yet here we are.