Pilot interview study reports a wide variation in long COVID symptom types and severity and awareness about the disease

In a recent study published in PLOS ONE, researchers reported the findings from a pilot interview study that was conducted to gain insights into the new and persistent symptoms experienced by long coronavirus disease (COVID) patients and to obtain data for the study design and participant recruitment for the Real-time Assessment of Community Transmission-Long COVID (REACT-LC) study.

Background

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Long COVID is the commonly used term for various persistent symptoms experienced by individuals who have recovered from severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections. These symptoms are not restricted to the respiratory system and affect many organ systems, including the nervous, cardiac, skeletal, muscular, renal, and digestive systems.

Since much of the early focus of governments and healthcare organizations was on controlling the spread of SARS-CoV-2 and decreasing the severity of coronavirus disease 2019 (COVID-19), the initiative to form support groups and raise awareness about long COVID was led by patients. Studies that have explored long COVID symptoms have recruited participants from many of these support groups through social media and clinical services established to help long COVID patients. This strategy could result in excluding long COVID patients who, for various reasons, have yet to join long COVID support groups.

The REACT-LC study aims to build on the REACT (Real-time Assessment of Community Transmission) study, which quantified the prevalence of SARS-CoV-2 in a random cross-section of the population of England, to identify the social, environmental, biological, and genetic basis of long COVID progression.

About the study

In the present study, the researchers conducted pilot interviews among individuals who were not hospitalized but had a documented history of COVID-19, with or without persistent symptoms. The aim was to identify biological and genetic pathways that could explain individual differences in response to COVID-19.

The participants for the pilot study were recruited from the individuals registered at the REACT-LC clinical assessment centers and belonged to the age group of 18 to 34 years. Research interviews were conducted immediately after the clinical assessment of the REACT-LC participants. The topic guide explored the acute symptoms experienced during the initial SARS-CoV-2 infection, the persistent and new symptoms that appeared after recovering from COVID-19, and the access to support for long COVID patients. A thematic analysis was conducted on the recorded semi-structured interviews.

Results

The results indicated that the 13 participants, comprising six females and seven males with a median age of 31, reported various fluctuating persistent and new symptoms. While some participants were confident about the association between their symptoms and the initial SARS-CoV-2 infection, other participants expressed a lack of clarity about the cause of the symptoms or felt that the COVID-19-associated lockdowns and other public health measures might have influenced the symptoms.

The persistent symptoms consisted of dyspnea, headaches, low energy, lack of smell or taste, fatigue, and in some cases, persistently high temperature. Most of the persistent symptoms seemed to occur during the initial SARS-CoV-2 infection and continued well after recovering from acute COVID-19. The participants reported that the symptoms were unpredictable and sometimes cyclical. In one case, the individual recovered enough to resume normal activities and exercise and then experienced a relapse.

The new symptoms, which occurred after recovering from the initial infection, were inconsistent across individuals and varied widely. While some of these new symptoms were common, such as sore throat, headaches, temperature, and fatigue, others, such as loss of coordination, changes in vision, chest pain, weight change, and pins and needles, were more uncommon. In some cases, there was a significant gap between recovering from COVID-19 and the onset of new symptoms. Some of the female participants reported changes associated with the menstrual cycles, with increased pain and worsening of long COVID symptoms during the periods.

The severity of the symptoms varied across individuals, with some reporting breathlessness and needing an inhaler after running. In contrast, another individual experienced breathlessness severe enough to affect daily activities such as showering.

While some of the participants were aware of long COVID, many of them did not consider their symptoms as a distinct disease or severe enough to diagnose. The authors believe that previous studies on long COVID that recruited participants from support groups run the risk of excluding the insights of individuals with new or persistent symptoms who do not recognize their symptoms as those of long COVID.

This could result in reduced access to healthcare and support for these individuals to manage their long COVID symptoms.

Conclusions

Overall, despite the small sample size of this pilot interview study, the results reported a wide variation in the type and severity of symptoms and in the understanding of long COVID among individuals experiencing new and persistent symptoms after recovering from SARS-CoV-2 infections.

The findings highlight the need for wider and varied inclusion of participants with long COVID symptoms while designing studies to understand the disease.

Written by

Dr. Chinta Sidharthan

Chinta Sidharthan is a writer based in Bangalore, India. Her academic background is in evolutionary biology and genetics, and she has extensive experience in scientific research, teaching, science writing, and herpetology. Chinta holds a Ph.D. in evolutionary biology from the Indian Institute of Science and is passionate about science education, writing, animals, wildlife, and conservation. For her doctoral research, she explored the origins and diversification of blindsnakes in India, as a part of which she did extensive fieldwork in the jungles of southern India. She has received the Canadian Governor General’s bronze medal and Bangalore University gold medal for academic excellence and published her research in high-impact journals.