Long COVID Citizen Scientists: Developing a Needs-Based Research Agenda by Persons Affected by Long COVID

Ziegler, Sarah; Raineri, Alessia; Nittas, Vasileios; Rangelov, Natalie; Vollrath, Fabian; Britt, Chantal; Puhan, Milo A.

doi:10.1007/s40271-022-00579-7

Cited by 21 publications

(18 citation statements)

References 15 publications

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“…Studies on brain tissue damage due to SARS-CoV-2 infection were lacking at the time that the work presented here was taking place, but the accumulated knowledge in this field is expected to identify additional KEs related to anatomical abnormalities and potentially bring to light risk factors related to lifestyle, environmental parameters, and preexisting health issues and how these factors potentially can impact the progression of neurological symptoms. Information about COVID-19 pathogenesis will continue to appear and neurological impacts will continue to be reported, notably linked to Long-COVID [ 173 , 174 ]. In addition, the disease might contribute to neurodevelopmental, neurodegenerative, and neuropsychiatric disorders which should be further investigated.…”

Section: Discussionmentioning

confidence: 99%

The Adverse Outcome Pathway Framework Applied to Neurological Symptoms of COVID-19

Högberg

Lam

Ohayon

et al. 2022

Cells

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Several reports have shown that the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) has the potential to also be neurotropic. However, the mechanisms by which SARS-CoV-2 induces neurologic injury, including neurological and/or psychological symptoms, remain unclear. In this review, the available knowledge on the neurobiological mechanisms underlying COVID-19 was organized using the AOP framework. Four AOPs leading to neurological adverse outcomes (AO), anosmia, encephalitis, stroke, and seizure, were developed. Biological key events (KEs) identified to induce these AOs included binding to ACE2, blood–brain barrier (BBB) disruption, hypoxia, neuroinflammation, and oxidative stress. The modularity of AOPs allows the construction of AOP networks to visualize core pathways and recognize neuroinflammation and BBB disruption as shared mechanisms. Furthermore, the impact on the neurological AOPs of COVID-19 by modulating and multiscale factors such as age, psychological stress, nutrition, poverty, and food insecurity was discussed. Organizing the existing knowledge along an AOP framework can represent a valuable tool to understand disease mechanisms and identify data gaps and potentially contribute to treatment, and prevention. This AOP-aligned approach also facilitates synergy between experts from different backgrounds, while the fast-evolving and disruptive nature of COVID-19 emphasizes the need for interdisciplinarity and cross-community research.

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Section: Discussionmentioning

confidence: 99%

The Adverse Outcome Pathway Framework Applied to Neurological Symptoms of COVID-19

Högberg

Lam

Ohayon

et al. 2022

Cells

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“…These results suggest that vaccination might limit long-term symptoms of fatigue but, for a small portion, fatigue may be a protracted symptom of COVID-19 infection. More research is needed to understand the potential long-term impacts, particularly research driven by patients experiencing protracted symptoms that centers their experiences and priorities [ 37 ].…”

Section: Discussionmentioning

confidence: 99%

Patient-Reported Outcomes for Fully Vaccinated COVID-19 Patients Over 6 Weeks: The Experiences of Clinical Breakthrough Cases

Vartanian

Fish

Gronowski

et al. 2022

Patient

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Background While coronavirus disease 2019 (COVID-19) vaccines have high rates of efficacy, fully vaccinated individuals can become infected with COVID-19. Among this population, symptoms tend to be less severe and shorter lasting. Less is known about how vaccinated individuals who contract COVID-19 experience the disease through patient-reported outcomes (PROs) and how this changes over time. Objective The aim of this study was to describe the physical, mental, and social health PROs for fully vaccinated individuals who contracted COVID-19 over a 6-week period. Design Prospective design using the Patient-Reported Outcomes Measurement Information System short-form (PROMIS-10) collected through a mobile application-based platform. Participant 1114 fully vaccinated patients who tested positive for COVID-19 at a large US health system and engaged with the study on or after 1 March 2021 and reported onset of illness prior to 1 November 2021. Main Measures Global physical and mental health PROMIS-10 T-scores for the 6-week period, component PROMIS-10 questions for the 6-week period, and component PROMIS-10 questions restricted to a subset of participants for the first month to measure individual recovery were analyzed. Key Results Mean global physical and mental health T-scores increased over time and remained within one standard deviation of the population mean. At baseline, at least 40% of participants reported good health for all component questions except Fatigue (25%), and the proportion reporting good health increased over time for all questions, with the largest improvements in Fatigue (25.5 to 67.5%), Pain (59.1 to 82.8%), and Emotional Problems (42.3 to 62.5%). Over the first month, the greatest positive changes in individual recovery were observed for Fatigue (65.0%), Pain (53.0%), and Emotional Problems (41.1%); at least 30% of respondents reported no change in at least one category, and the greatest decreases were for Usual Social Activities (23.9%), Social Satisfaction (23.2%), and Mental Health (21.8%). Conclusions This study provides an important step towards better understanding the impact of ‘breakthrough’ COVID-19 infections on clinically engaged, fully vaccinated patients’ physical and mental health to improve support for their treatment and recovery. Supplementary Information The online version contains supplementary material available at 10.1007/s40271-022-00605-8.

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“…The clinical characteristics of the consequences of anSARS-CoV-2 infection are different. About 20% of the adults had symptoms related to developing long-term complications of the virus [ 50 ].…”

Section: Complications Of Covid-19 Infectionsmentioning

confidence: 99%

The Significance of COVID-19 Diseases in Lipid Metabolism Pregnancy Women and Newborns

Jovandaric¹,

Dokić

Babovic

et al. 2022

IJMS

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Coronavirus disease (COVID-19) is an infectious disease caused by SARS-CoV-2. Elderly people, people with immunodeficiency, autoimmune and malignant diseases, as well as people with chronic diseases have a higher risk of developing more severe forms of the disease. Pregnant women and children can becomesick, although more often they are only the carriers of the virus. Recent studies have indicated that infants can also be infected by SARS-CoV-2 and develop a severe form of the disease with a fatal outcome. Acute Respiratory Distress Syndrome (ARDS) ina pregnant woman can affect the supply of oxygen to the fetus and initiate the mechanism of metabolic disorders of the fetus and newborn caused by asphyxia. The initial metabolic response of the newborn to the lack of oxygen in the tissues is the activation of anaerobic glycolysis in the tissues and an increase in the concentration of lactate and ketones. Lipid peroxidation, especially in nerve cells, is catalyzed by iron released from hemoglobin, transferrin and ferritin, whose release is induced by tissue acidosis and free oxygen radicals. Ferroptosis-inducing factors can directly or indirectly affect glutathione peroxidase through various pathways, resulting in a decrease in the antioxidant capacity and accumulation of lipid reactive oxygen species (ROS) in the cells, ultimately leading to oxidative cell stress, and finally, death. Conclusion: damage to the mitochondria as a result of lipid peroxidation caused by the COVID-19 disease can cause the death of a newborn and pregnant women as well as short time and long-time sequelae.

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Long COVID Citizen Scientists: Developing a Needs-Based Research Agenda by Persons Affected by Long COVID

Cited by 21 publications

References 15 publications

The Adverse Outcome Pathway Framework Applied to Neurological Symptoms of COVID-19

The Adverse Outcome Pathway Framework Applied to Neurological Symptoms of COVID-19

Patient-Reported Outcomes for Fully Vaccinated COVID-19 Patients Over 6 Weeks: The Experiences of Clinical Breakthrough Cases

The Significance of COVID-19 Diseases in Lipid Metabolism Pregnancy Women and Newborns

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