Long COVID unmasked: Patients share varied physical, mental, and social challenges

In a recent study published in Scientific Reports, researchers used Patient-Reported Outcomes Survey (PROMIS-10) survey data filled out by the My COVID Diary (MCD) trial participants and their narrative submissions to describe patient experiences of the post-acute sequelae of coronavirus disease 2019 (COVID-19) or long COVID.

Study: Integrating patient-reported physical, mental, and social impacts to classify long COVID experiences. Image Credit: Starocean/Shutterstock.comStudy: Integrating patient-reported physical, mental, and social impacts to classify long COVID experiences. Image Credit: Starocean/Shutterstock.com

Background

Patient experiences have been used to study long COVID, a condition characterized by prolonged mental and physical symptoms.

Despite significant studies, the focus on medical records can ignore the pandemic's social implications, including family relations, work-life balance, and economic stability. Long COVID social, mental, and physical experiences are still poorly understood.

About the study

In the present observational cross-sectional study, researchers provided a holistic picture of post-acute COVID-19 sequelae experiences, encompassing social, mental, and physical symptoms, which can assist healthcare systems in delivering tailored long-term treatments to promote patient recovery.

The team selected 634 individuals from the MCD trial who were enrolled in the My COVID Diary project and reported poor health (PROMIS-10 scores < 3.0) at six months.

All individuals were 18 years of age or older, had polymerase chain reaction (PCR) test reports positive for severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), and submitted one or more journal entries between weeks 20 and 28 following the first symptom onset, confirming persistent COVID-19 symptoms five to six months after entering the research.

The PROMIS-10 and participant narrative data were utilized to describe and classify their extended COVID experiences. To characterize and comprehend the various sorts of extended COVID experiences, latent class analysis (LCA) was used. The diary entries were coded and analyzed using a theme analysis technique.

The method was founded on two fundamental principles: long COVID knowledge must be multidimensional, including social, mental, and physical effect domains, and firmly based on patient voices.

Twistle data-collecting prompts were sent to MCD participants regularly (every other day for the initial 14 days, once a week between weeks 3.0 and 13, and every month after that).

Twistle alerts participants at each time point to gather formal, validated surveys and encourages individuals to journal their experiences and symptoms. The participants used Twistle to submit their survey replies and free-text diary entries, and the information was subsequently saved for analysis.

Results

The research included 51 participants, 58% of whom were white and 68% were female. For SARS-CoV-2 infection, 52% reported hospitalization or ED visits. The mean PROMIS-10 mental and physical T scores were 41 and 40, respectively, indicating worse functional health than the general public.

After one to four weeks of SARS-CoV-2 infection, the initial mental and physical global t scores were 44 and 42, respectively, indicating minor reductions in global health six months later.

The researchers classified long COVID experiences into four categories: some lingering issues (107 individuals, 17%), significant physical symptomatology (113 individuals, 18%), ongoing cognitive and mental difficulties (235 individuals, 36%), and multiple compounding challenges (179 individuals, 28%); each category included social, mental, and physical health difficulties with varying levels of impairment.

The patient accounts supported and elucidated the categories further. At five to six months, a further LCA analysis corroborated patterns of responses across four groups, with no significant differences in physical and mental health outcomes.

Individuals with lingering issues reported high functional health, but certain challenges slowed healing. They reported positive results in all components except for emotional difficulties and mental health.

The most likely good result was great quality of life (88%), whereas the most likely negative outcome was emotional issues (50%). Pandemic limitations reduced social happiness and made some individuals feel lonely. Despite the difficulties, they went about their everyday lives.

Individuals experiencing severe physical symptoms reported persistent effects that interfered with daily functioning and normal activities five to six months after the infection. Poor results were more likely for physical and general health questions, whereas emotional problems, mental health, and social satisfaction had lower probabilities.

They reported weariness, mental health difficulties, brain fog, and cognitive problems. Family and friends' support helped overcome obstacles.

Five to six months after infection, individuals with persisting cognitive and mental impairments reported fewer physical symptoms but considerable social and everyday functioning issues.

Their PROMIS-10 ratings indicated poor mental health, social satisfaction, and emotional issues such as anxiety, depression, and low motivation. Participating in social activities frequently results in tension, loneliness, and isolation. Some even resume workout regimens but find it difficult.

Individuals who faced various obstacles reported dealing with physical, mental, and cognitive impairments that impacted their quality of life. They performed poorly in all PROMIS-10 components except for discomfort and exhaustion.

They suffered from chronic physical weariness, mental health difficulties such as anxiety and depression, brain fog, and cognitive impairments. These symptoms resulted in exhaustion, overload, and worry, impacting everyday functions.

Conclusion

Based on the study findings, long COVID patients encounter a complicated set of social, mental, and physical challenges. These challenges connect in various ways, the most common being continuing mental and cognitive struggles.

The study emphasizes the significance of an integrated, "whole person" approach to extended COVID management, comprising multidisciplinary teams and extensive mental health and social care.

The study underlines the need to address particular health concerns, such as social isolation and persistent physical and cognitive symptoms, to improve patient identification and care.

Journal reference:
Pooja Toshniwal Paharia

Written by

Pooja Toshniwal Paharia

Pooja Toshniwal Paharia is an oral and maxillofacial physician and radiologist based in Pune, India. Her academic background is in Oral Medicine and Radiology. She has extensive experience in research and evidence-based clinical-radiological diagnosis and management of oral lesions and conditions and associated maxillofacial disorders.

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