Challenges in defining [LC]: Striking differences across literature, Electronic Health Records, and patient-reported information, 2021, Rando et al

Since late 2019, the novel coronavirus SARS-CoV-2 has introduced a wide array of health challenges globally. In addition to a complex acute presentation that can affect multiple organ systems, increasing evidence points to long-term sequelae being common and impactful.

As the worldwide scientific community forges ahead with efforts to characterize a wide range of outcomes associated with SARS-CoV-2 infection, the proliferation of available data has made it clear that formal definitions are needed in order to design robust and consistent studies of Long COVID that consistently capture variation in long-term outcomes. In the present study, we investigate the definitions used in the literature published to date and compare them against data available from electronic health records and patient-reported information collected via surveys.

Long COVID holds the potential to produce a second public health crisis on the heels of the pandemic. Proactive efforts to identify the characteristics of this heterogeneous condition are imperative for a rigorous scientific effort to investigate and mitigate this threat.


Pre-print: https://www.medrxiv.org/content/10.1101/2021.03.20.21253896v1

Authors include at least one long hauler, Hannah Davis.

 

This is the crux of the matter, IMO:

Finally, studies varied wide in the terminology used to describe patient-reported symptoms. Comparing symptoms described across the literature reviewed revealed 142 unique terms related to symptoms, including scales used to assess symptom profiles (e.g., the University Of California San Diego Shortness Of Breath Questionnaire) or other dimensions of recovery (e.g., 5-level EuroQoL 5-Dimensions for quality of life) (Figure 1). The most commonly evaluated symptoms were fatigue (15 studies), dyspnea (11 studies), chest pain (11 studies), and headache (8 studies). In many cases, studies assessed similar symptoms but differed in the nomenclature used. For examples, the studies analyzed included a mixture of reports of ageusia,32,52,79 anosmia,32,52,79,82 anosmia/ageusia,76 loss of smell,59,68 loss of taste,59 loss of smell and taste,66 loss of smell or taste,65 and loss of smell and/or taste.77 While in many cases there are parallels among studies (e.g., studies reporting anosmia and loss of smell are likely to be asking the same or similar questions of patients), the lack of a strict definition prevents straight-forward symptom matching across analyses. Further, there seemed to be limited surveying of neurological and systemic symptoms in some cases, hence the absence of common symptoms like cognitive dysfunction or "brain fog", sensorimotor symptoms, and post-exertional malaise. This is where standard use of a full terminology such as HPO would be useful to create expressive and consistent meaning across studies.​

Without a common vocabulary, it's no surprise that communication between patients and physicians fails. And that's not even counting the massive misdiagnosis rates of "anxiety" and "depression". Medicine has serious systemic problems dealing with neurological symptoms that aren't caused by injury to neurons or blocked signals.

 

https://twitter.com/user/status/1375857632997736452

 

This is spot on and I'm glad to see it being addressed.

When you have brain fog and issues communicating and trying to describe symptoms it's all too easy for doctors to.out words in your mouth. Quite complex and nuanced symptoms are quickly reduced to memory and concentration problems when they are very much more than that.