![]() In this exploratory qualitative study, we aimed to better understand the lived experiences of patients with PASC with a particular focus on how patients describe cognitive complaints (“brain fog”) and fatigue, and the impact of these symptoms on daily activities, work/employment, and interpersonal relationships. Validation of patients’ concerns and deeper insight into their condition is needed beyond illness management. It is important for providers to understand how patients themselves describe PASC and its impact on their lives to help patients manage their condition. However, our understanding of how patients experience and make sense of these symptoms in their daily lives is still in early stages. Cognitive complaints (i.e., “brain fog”) and fatigue have been reported in the literature as two of the most debilitating symptoms for patients with PASC. A recent meta-analysis of 81 studies reported 32% of patients experienced fatigue and 22% reported cognitive impairment 12 or more weeks after COVID-19 diagnosis. Open-ended survey studies have also highlighted themes such as multiple symptoms with variable intensity, challenges seeking medical care, motivation to move forward with self-compassion, and also interest in participating in research to explore more about the condition. Įarly qualitative research on the broader patient experience of COVID-19 has revealed some common themes including symptom variability, a heavy sense of stigma, siloed care, the burden on patients to access care, and fear of a permanent reduction in physical and cognitive abilities. Several initiatives have been launched to gather clinical data and track symptoms and outcomes of COVID-19. These symptoms can significantly impact quality of life for COVID-19 survivors. Similar symptoms including fatigue, concentration difficulties, mood changes, and sleeping difficulties have also been reported in children and adolescents even after asymptomatic initial infection. Shortness of breath, cough, chest pain, dizziness, fatigue, anosmia, dysgeusia, headache, and cognitive difficulties are among the most common symptoms reported in the studies. Studies on long COVID have reported multisystem involvement with a range of physical and neuropsychiatric symptoms after infection. The Centers for Disease Control and Prevention (CDC) defines post-COVID-19 conditions as “new, returning, or ongoing health problems people can experience after first being infected with the virus that causes COVID-19”. Besides significant mortality, there is a growing population of patients with post-acute sequelae of SARS-CoV-2 (PASC), a term coined by the National Institute of Health (NIH) and commonly referred to as long COVID or post-COVID-19 condition. ![]() The COVID-19 pandemic has drastically affected the lives of millions of people around the globe. Providers can better support COVID-19 survivors during their recovery by identifying their needs in a sensitive and timely manner. ![]() Our findings highlight PASC’s negative impact on patients’ daily lives. Furthermore, underlying social stigma contributed to negative emotions, which significantly affected emotional and mental health. Personal relationships were affected with change of responsibilities, difficulty parenting, social isolation, and guilt due to the burdens placed on family. Fatigue and brain fog affected all domains and identified subthemes included symptoms’ synergistic effects, difficulty with multitasking, lack of support, poor self-perception, and fear of loss of income and employment. Participants frequently used descriptive and metaphorical language to describe symptoms that were relapsing-remitting and unpredictable. We audio-recorded, transcribed, and analyzed interviews thematically using a combined deductive-inductive approach and collected participants’ characteristics from chart review. We conducted semi-structured qualitative interviews with 15 patients of a Midwestern academic hospital’s post-COVID-19 clinic. We aimed to better understand the lived experiences of patients with PASC, focusing on the impact of cognitive complaints (“brain fog”) and fatigue on (1) daily activities, (2) work/employment, and (3) interpersonal relationships. Post-acute sequelae of SARS-CoV-2 (PASC) is a poorly understood condition with significant impact on quality of life.
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