TY - JOUR
T1 - Thematic analysis to explore patients' experiences with long COVID-19
T2 - A conceptual model of symptoms and impacts on daily lives
AU - Rofail, Diana
AU - Somersan-Karakaya, Selin
AU - Choi, Julia Y.
AU - Przydzial, Krystian
AU - Zhao, Yuming
AU - Hussein, Mohamed
AU - Norton, Thomas D.
AU - Podolanczuk, Anna J.
AU - Mylonakis, Eleftherios
AU - Geba, Gregory P.
N1 - Funding Information:
This study was funded by Regeneron Pharmaceuticals, Inc. Certain aspects of this project have been funded in whole or in part with federal funds from the Department of Health and Human Services; Office of the Administration for Strategic Preparedness and Response; Biomedical Advanced Research and Development Authority, under OT number: HHSO100201700020C.
Funding Information:
DR is a Regeneron Pharmaceuticals, Inc. employee/stockholder and former Roche employee, and current stockholder. SS-K, YZ, MH, TDN and GPG are employees/stockholders at Regeneron Pharmaceuticals, Inc. JYC and KP are employees of Modus Outcomes, and consulted for Regeneron Pharmaceuticals, Inc. AJP reported receiving personal fees from Regeneron Pharmaceuticals, Inc. during the conduct of the study, personal fees from Imvaria, Boehringer Ingelheim, EBSCO/Dynamed and Roche outside the submitted work. EM reports payments to his institution received from SciClone Pharmaceuticals, Regeneron Pharmaceuticals, Inc., Pfizer, Chemic Labs/KODA Therapeutics, Cidara and Leidos Biomedical Research/NCI; and reports Advisory board: Basilea and grants from NIH/NIAID, NIH/NIGMS and BARDA.
Publisher Copyright:
© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.
PY - 2024/1/17
Y1 - 2024/1/17
N2 - Objectives There is limited qualitative research on patients' experiences with long COVID-19, and how specific symptoms impact their daily lives. The study aimed to understand patients' lived experiences of long COVID-19 and to develop a conceptual model representing the symptoms and their impact on overall quality of life. Setting Qualitative study consisting of a comprehensive literature review, and in-depth clinician and patient semistructured interviews. Participants Forty-one adult patients with long COVID-19, of whom 18 (44%) were recruited through Regeneron Pharmaceuticals's clinical trials and 23 (56%) through recruitment agencies; 85.4% were female and 73.2% were White. Five independent clinicians treating patients with long COVID-19 were interviewed. Concept saturation was also assessed. Primary and secondary outcomes Interview transcripts were analysed thematically to identify concepts of interest spontaneously mentioned by patients, including symptoms and their impacts on daily life, to guide the development of the conceptual model. Results Findings from the literature review and clinician and patient interviews resulted in the development of a conceptual model comprising two overarching domains: symptoms (upper respiratory tract, lower respiratory tract, smell and taste, systemic, gastrointestinal, neurocognitive and other) and impacts (activities of daily living, instrumental activities of daily living, physical impacts, emotional, social/leisure activities and professional impacts). Saturation was achieved for the reported impacts. The symptoms reported were heterogenic; neurocognitive symptoms, such as numbness, ringing in ears, haziness, confusion, forgetfulness/memory problems, brain fog, concentration, difficulties finding the right word and challenges with fine motor skills, were particularly pertinent for several months. Conclusion The conceptual model, developed based on patient experience data of long COVID-19, highlighted numerous symptoms that impact patients' physical and mental well-being, and suggests humanistic unmet needs. Prospective real-world studies are warranted to understand the pattern of long COVID-19 experienced in larger samples over longer periods of time.
AB - Objectives There is limited qualitative research on patients' experiences with long COVID-19, and how specific symptoms impact their daily lives. The study aimed to understand patients' lived experiences of long COVID-19 and to develop a conceptual model representing the symptoms and their impact on overall quality of life. Setting Qualitative study consisting of a comprehensive literature review, and in-depth clinician and patient semistructured interviews. Participants Forty-one adult patients with long COVID-19, of whom 18 (44%) were recruited through Regeneron Pharmaceuticals's clinical trials and 23 (56%) through recruitment agencies; 85.4% were female and 73.2% were White. Five independent clinicians treating patients with long COVID-19 were interviewed. Concept saturation was also assessed. Primary and secondary outcomes Interview transcripts were analysed thematically to identify concepts of interest spontaneously mentioned by patients, including symptoms and their impacts on daily life, to guide the development of the conceptual model. Results Findings from the literature review and clinician and patient interviews resulted in the development of a conceptual model comprising two overarching domains: symptoms (upper respiratory tract, lower respiratory tract, smell and taste, systemic, gastrointestinal, neurocognitive and other) and impacts (activities of daily living, instrumental activities of daily living, physical impacts, emotional, social/leisure activities and professional impacts). Saturation was achieved for the reported impacts. The symptoms reported were heterogenic; neurocognitive symptoms, such as numbness, ringing in ears, haziness, confusion, forgetfulness/memory problems, brain fog, concentration, difficulties finding the right word and challenges with fine motor skills, were particularly pertinent for several months. Conclusion The conceptual model, developed based on patient experience data of long COVID-19, highlighted numerous symptoms that impact patients' physical and mental well-being, and suggests humanistic unmet needs. Prospective real-world studies are warranted to understand the pattern of long COVID-19 experienced in larger samples over longer periods of time.
KW - COVID-19
KW - INFECTIOUS DISEASES
KW - Patient Reported Outcome Measures
UR - http://www.scopus.com/inward/record.url?scp=85182956505&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85182956505&partnerID=8YFLogxK
U2 - 10.1136/bmjopen-2023-076992
DO - 10.1136/bmjopen-2023-076992
M3 - Article
C2 - 38233059
AN - SCOPUS:85182956505
SN - 2044-6055
VL - 14
JO - BMJ open
JF - BMJ open
IS - 1
ER -