Language used to describe 'long COVID' can impact patient outcomes

A new study published on the preprint server medRxiv* utilized an online experimental platform to explore the effect of different messages about long coronavirus disease 2019 (COVID-19) on expectations of illness outcomes.

The results of this study emphasize communications about long COVID to facilitate recovery and provide support, rather than focus on symptom uncertainty and adverse health outcomes. Furthermore, the authors from the current study found that using the term ‘ongoing COVID-19 recovery,’ where possible, rather than ‘long COVID,’ may reduce negative expectations associated with the illness.

Study: The Effects of Messaging on Expectations and Understanding of Long COVID: An Online Randomised Trial. Image Credit: iVasoUSky / Shutterstock.com

Introduction

The post-COVID-19 syndrome, which is also commonly referred to as the long COVID, is defined as the persistence of symptoms COVID-19 that continue for more than four weeks and cannot be explained by an alternative diagnosis. Some of the most common symptoms of long COVID include fatigue, shortness of breath, headache, muscle ache, and difficulty in concentrating, all of which can have a significant impact on the affected individual’s ability to participate in daily activities.

While the biological factors that contribute to long COVID are still being investigated, there are several psychological processes that can also impact the severity of this condition. For example, the patient’s expectations of illness progression, which can include illness labels and associated symptoms, the anticipated timeline of the illness, as well as the physical, cognitive, and social consequences of the illness.

Negative expectations such as illness uncertainty are linked to poor or adverse health outcomes and diminished quality of life. Some of these adverse outcomes can include greater perceived symptom severity and duration, as well as a lack of control regarding the individual themselves as well as their treatment.

About the study

In this context, the researchers in the present study examined the effect of different communication strategies that manipulate the information given to patients relating to different conditions of long COVID.

To this end, the researchers hypothesized that when the term of the condition, the uncertainty of the illness, and level of support discussed and used in the communication are altered, it would also lead to expectations that affect the illness. Expectations may be more negative when symptoms are described as long COVID rather than ongoing COVID-19 recovery, uncertainty is emphasized, and only basic support, as opposed to additional support, is provided.

The current study was an online survey experiment that examined the effects of different communication strategies on the expectations of long COVID, such as the expected symptom duration, expected symptom severity, expected quality of life, expected personal control, expected treatment control, and the expected illness coherence. These were the main outcomes measured in the study.

The experiment structure tested a total of three primary hypotheses. The first hypothesis included illness description, wherein the researchers anticipated that participants would report more negative expectations of their illness when they were diagnosed with long COVID as compared to those diagnosed with ongoing COVID-19 recovery.

The second hypothesis on illness uncertainty predicted that participants would report more negative expectations when uncertainty was emphasized during their diagnosis. Third, the researchers predicted that participants who were told they were provided basic support would report more negative consequences as compared to those who were provided what was described as ‘enhanced’ support.

Each participant was randomly allocated to one condition and the main outcome was measured. All study participants were over 18 years old, residents of the United Kingdom, did not have a confirmed COVID-19 positive test result and were fluent in English. Taken together, a total of 1,110 participants were included in the current study and provided monetary compensation.

Based on the information available from the National Health Service (NHS), National Institute for Health and Care Excellence, Office for National Statistics, and discussions with the General Physicians, the researchers presented the participants with scenarios and questioned them between October 14 and 16, 2021.

Study findings

About 78% of the study participants were white, whereas 63.1% did not know anyone who was diagnosed with long COVID. Due to successful randomization in the study, the researchers found that there were no significant differences in demographics.

The researchers found that the study participants were able to differentiate between the description of long COVID and ongoing COVID-19 recovery. To this end, participants were more likely to label a given attribution of the illness as part of the ongoing COVID-19 recovery conditions when provided symptoms within that category as compared to those that were defined as long COVID conditions. Similarly, long COVID attributions were successfully labeled as long COVID conditions over 58% of the time.  

Illness description and uncertainty were found to have a significant impact on the participants’ perception of their symptom duration. For illness description, the participants in the long COVID conditions reported higher expected symptom duration than the participants in the ongoing COVID-19 recovery conditions.

Likewise, regarding illness uncertainty, participants in the uncertainty group emphasized conditions that were associated with a more extensive illness duration as compared to participants in the uncertainty not emphasized conditions. Neither of the uncertainty groups reported any difference on how this aspect of the illness would impact their quality of life.

Based on their hypothesis, the researchers found a significant difference in scenario 1, wherein long COVID was used as the illness description, uncertainty was emphasized, and basic support was described as the treatment approach. Comparatively, when ongoing COVID-19 recovery was used to describe the illness, uncertainty was not emphasized, and enhanced support was described as the treatment approach, participants reported shorter expected symptom duration, higher expected treatment control, and better-expected illness coherence.

Limitations

The main limitation of the study is the hypothetical nature of the experiment, where the participants are expected to provide information. Therefore, caution must be exercised when extrapolating the findings to a real-world context.

Unfortunately, the researchers do not measure actual health outcomes. However, their findings are consistent with other related reports. The researchers call for a longitudinal design of research to explore the relationship between negative expectations and Long COVID health outcomes.

Implications

One of the key findings of this study is that language is crucial. When informing people about illness and symptoms related to Long COVID, the choice of words shapes the expectations.

Furthermore, illness uncertainty and lack of adequate available support increase negative expectations and subsequently adverse health outcomes. Therefore, because of the limited amount of information available on this illness, the researchers emphasize the need for healthcare providers to instead focus should be on personal recovery and additional support. Taken together, the study findings indicate that it may be beneficial to use the term ongoing COVID-19 recovery, as opposed to long COVID.

*Important notice

medRxiv publishes preliminary scientific reports that are not peer-reviewed and, therefore, should not be regarded as conclusive, guide clinical practice/health-related behavior, or treated as established information.

Written by

Dr. Ramya Dwivedi

Ramya has a Ph.D. in Biotechnology from the National Chemical Laboratories (CSIR-NCL), in Pune. Her work consisted of functionalizing nanoparticles with different molecules of biological interest, studying the reaction system and establishing useful applications.