Patient-Led Research Collaborative: embedding patients in the Long COVID narrative

McCorkell, Lisa; Assaf, Gina S.; Davis, Hannah; Wei, Hannah; Akrami, Athena

doi:10.1097/pr9.0000000000000913

Cited by 52 publications

(42 citation statements)

References 29 publications

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“…a) Distribution of Fatigue Assessment Scale scores for recovered ( n = 257, blue) and unrecovered ( n = 3505, yellow) population. The vertical dashed lines indicate the range for “No fatigue” [10] , [11] , [12] , [13] , [14] , [15] , [16] , [17] , [18] , [19] , [20] , [21] , “Fatigue” [22] , [23] , [24] , [25] , [26] , [27] , [28] , [29] , [30] , [31] , [32] , [33] , [34] , and “Extreme” (>=35). Mean values for each distribution are also marked.…”

Section: Resultsmentioning

confidence: 99%

“…The aim of this study is to better describe the patient experience and recovery process in those with confirmed or suspected COVID-19 illness, with a specific emphasis on the Long COVID experience. The unique approach of this study utilizes patient-driven research [14] in order to establish a foundation of evidence for medical investigation, improvement of care [ 15 , 16 ], and advocacy for the Long COVID population. In this study, we investigate the patient's lived experience, emphasizing symptom course and severity over time with an in-depth look into neurological and neuropsychiatric symptoms, recovery, and return to baseline, including work impact.…”

Section: Introductionmentioning

confidence: 99%

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Characterizing long COVID in an international cohort: 7 months of symptoms and their impact

Davis¹,

Assaf²,

McCorkell³

et al. 2021

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Background: A significant number of patients with COVID-19 experience prolonged symptoms, known as Long COVID. Few systematic studies have investigated this population, particularly in outpatient settings. Hence, relatively little is known about symptom makeup and severity, expected clinical course, impact on daily functioning, and return to baseline health. Methods: We conducted an online survey of people with suspected and confirmed COVID-19, distributed via COVID-19 support groups (e.g. Body Politic, Long COVID Support Group, Long Haul COVID Fighters) and social media (e.g. Twitter, Facebook). Data were collected from September 6, 2020 to November 25, 2020. We analyzed responses from 3762 participants with confirmed (diagnostic/antibody positive; 1020) or suspected (diagnostic/antibody negative or untested; 2742) COVID-19, from 56 countries, with illness lasting over 28 days and onset prior to June 2020. We estimated the prevalence of 203 symptoms in 10 organ systems and traced 66 symptoms over seven months. We measured the impact on life, work, and return to baseline health.Findings: For the majority of respondents (>91%), the time to recovery exceeded 35 weeks. During their illness, participants experienced an average of 55.9+/-25.5 (mean+/-STD) symptoms, across an average of 9.1 organ systems. The most frequent symptoms after month 6 were fatigue, post-exertional malaise, and cognitive dysfunction. Symptoms varied in their prevalence over time, and we identified three symptom clusters, each with a characteristic temporal profile. 85.9% of participants (95% CI, 84.8% to 87.0%) experienced relapses, primarily triggered by exercise, physical or mental activity, and stress. 86.7% (85.6% to 92.5%) of unrecovered respondents were experiencing fatigue at the time of survey, compared to 44.7% (38.5% to 50.5%) of recovered respondents. 1700 respondents (45.2%) required a reduced work schedule compared to pre-illness, and an additional 839 (22.3%) were not working at the time of survey due to illness. Cognitive dysfunction or memory issues were common across all age groups (~88%). Except for loss of smell and taste, the prevalence and trajectory of all symptoms were similar between groups with confirmed and suspected COVID-19. Interpretation: Patients with Long COVID report prolonged, multisystem involvement and significant disability. By seven months, many patients have not yet recovered (mainly from systemic and neurological/cognitive symptoms), have not returned to previous levels of work, and continue to experience significant symptom burden. Funding: All authors contributed to this work in a voluntary capacity. The cost of survey hosting (on Qualtrics) and publication fee was covered by AA's research grant (Wellcome Trust/Gatsby Charity via Sainsbury Wellcome center, UCL).

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Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Characterizing long COVID in an international cohort: 7 months of symptoms and their impact

Davis¹,

Assaf²,

McCorkell³

et al. 2021

Self Cite

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“…Studies investigating risk factors associated with post-COVID-19 symptoms are urgently needed to promote focus on this issue in healthcare systems and, thereby, facilitate counselling and management strategies for these patients. A relevant topic for considering in future studies would be a potential participation of the patients into the designs since COVID-19 patients are highly active and their point of view may be crucial for designing studies according to their needs [59] . Studies investigating underlying mechanisms explaining post-COVID-19 symptoms are needed for better management of this group of individuals, the long-haulers [4] .…”

Section: Discussionmentioning

confidence: 99%

Prevalence of post-COVID-19 symptoms in hospitalized and non-hospitalized COVID-19 survivors: A systematic review and meta-analysis

Fernández‐de‐las‐Peñas

Palacios‐Ceña

Gómez‐Mayordomo

et al. 2021

European Journal of Internal Medicine

383

300

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Background : Single studies support the presence of several post-COVID-19 symptoms; however, no meta-analysis differentiating hospitalized and non-hospitalized patients has been published to date. This meta-analysis analyzes the prevalence of post-COVID-19 symptoms in hospitalized and non-hospitalized patients recovered from COVID-19 . Methods : MEDLINE, CINAHL, PubMed, EMBASE, and Web of Science databases, as well as medRxiv and bioRxiv preprint servers were searched up to March 15, 2021. Peer-reviewed studies or preprints reporting data on post-COVID-19 symptoms collected by personal, telephonic or electronic interview were included. Methodological quality of the studies was assessed using the Newcastle-Ottawa Scale. We used a random-effects models for meta-analytical pooled prevalence of each post-COVID-19 symptom, and I² statistics for heterogeneity. Data synthesis was categorized at 30days, 60days, and ≥90 days after . Results : From 15,577 studies identified, 29 peer-reviewed studies and 4 preprints met inclusion criteria. The sample included 15,244 hospitalized and 9,011 non-hospitalized patients. The methodological quality of most studies was fair. The results showed that 63.2%, 71.9% and 45.9% of the sample exhibited ≥one post-COVID-19 symptom at 30, 60, or ≥90days after onset/hospitalization. Fatigue and dyspnea were the most prevalent symptoms with a pooled prevalence ranging from 35% to 60% depending on the follow-up. Other post-COVID-19 symptoms included cough (20-25%), anosmia (10-20%), ageusia (15-20%) or joint pain (15-20%). Time trend analysis revealed a decreased prevalence 30days after with an increase after 60days . Conclusion : This meta-analysis shows that post-COVID-19 symptoms are present in more than 60% of patients infected by SARS-CoV‑2. Fatigue and dyspnea were the most prevalent post-COVID-19 symptoms, particularly 60 and ≥90 days after.

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“…This wide array of complaints was similar to those of Assaf et al who also surveyed prolonged COVID symptoms. 14 The nature and closeness of these symptoms to CFS prompted us to study this relationship. Participants who complained of fatigue, cognitive problems, recurrent falls, stress, sadness, and sleep problems were significantly related to CFS possibility or probability.…”

Section: Discussionmentioning

confidence: 99%

Long COVID and chronic fatigue syndrome: A survey of elderly female survivors in Egypt

Aly

Saber

2021

Int J Clinical Practice

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Objectives This study aimed to investigate post‐COVID‐19 symptoms amongst elderly females and whether they could be a risk factor for developing chronic fatigue syndrome (CFS) later on. Methods This was a retrospective cross‐sectional study, in the form of an online survey. A total of 115 responses were finally included. Results The mean age was 73.18 ± 6.42. Eighty‐nine reported symptoms in the post‐recovery period; of these 54 had no symptoms of CFS, 60 were possible, and only 1 was probable. Fatigue was reported by 66, musculoskeletal symptoms by 56, and sleep problems by 73. Twenty‐nine patients visited a doctor's office as a result. Post‐recovery symptoms were significantly related to stress, sadness and sleep disturbances. Also, stress, sadness, sleep disturbances, fatigue, cognitive impairment, and recurrent falls were all significantly associated with CFS‐like symptoms. Conclusions From our findings, the presence of fatigue, cognitive impairment, stress, sadness, sleep disturbances and recurrent falls in the post‐recovery period were all significantly associated with CFS‐like symptoms. To conclude it would be reasonable to screen for long COVID and consider the potential for developing CFS later on. Whether it can be a risk factor for developing CFS‐like other viral infections will need more larger scale studies to confirm this.

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Patient-Led Research Collaborative: embedding patients in the Long COVID narrative

Abstract: This article discusses the value of patient-led research, the formation of Patient-Led Research for COVID-19, and how to improve Long COVID care and research.

Cited by 52 publications

References 29 publications

Characterizing long COVID in an international cohort: 7 months of symptoms and their impact

Characterizing long COVID in an international cohort: 7 months of symptoms and their impact

Prevalence of post-COVID-19 symptoms in hospitalized and non-hospitalized COVID-19 survivors: A systematic review and meta-analysis

Long COVID and chronic fatigue syndrome: A survey of elderly female survivors in Egypt

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