Long COVID quality of life and healthcare experiences in the UK:  a mixed method online survey

Rebecca Owen; Ruth Ashton; L. Skipper; B. E. Phillips; J. Yates; Callum Thomas; Francesco  Ferraro; T. Bewick; K. Haggan; Mark Faghy

doi:10.1007/s11136-023-03513-y

Long COVID quality of life and healthcare experiences in the UK: a mixed method online survey

Rebecca Owen, Ruth Ashton, L. Skipper, B. E. Phillips, J. Yates, Callum Thomas, Francesco Ferraro, T. Bewick, K. Haggan, Mark Faghy

Research output: Contribution to journal › Article › peer-review

11 Citations (Scopus)

13 Downloads (Pure)

Abstract

Purpose The complexity of long COVID and its diverse symptom profile contributes to unprecedented challenges for patients, clinicians, and healthcare services. The threat of long COVID remains ignored by Governments, the media and public health messaging, and patients’ experiences must be heard through understanding of the lived experience. This study aimed to understand the lived experience of those living with long COVID. Methods An online web-based survey was designed using Patient and Public Involvement and Engagement (PPIE) to increase understanding of the lived experiences of long COVID, and was distributed through PPIE groups, social media, and word of mouth. The survey used closed and open questions relating to demographics, pre- and post-COVID-19 health quality of life, daily activities and long COVID experiences. Results Within our sample of 132 people living with long COVID, the findings highlight that individuals are being severely impacted by their symptoms and are unable to or limited in participating in their daily activities, reducing quality of life. Long COVID places strain on relationships, the ability to live life fully and is detrimental to mental health. Varying health care experiences are described by participants, with reports of medical gaslighting and inadequate support received. Conclusions Long COVID has a severe impact on the ability to live life fully, and strains mental health. The appropriate mechanisms and support services are needed to support those living with long COVID and manage symptoms.

Original language	English
Pages (from-to)	133-143
Number of pages	11
Journal	Quality of Life Research
Volume	33
Issue number	1
Early online date	22 Sept 2023
DOIs	https://doi.org/10.1007/s11136-023-03513-y
Publication status	E-pub ahead of print - 22 Sept 2023
Externally published	Yes

Bibliographical note

© The Author(s) 2023
This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.

Keywords

Long COVID
Morbidity
Pandemic
Patient and public involvement and engagement (PPIE)
Public health

ASJC Scopus subject areas

Public Health, Environmental and Occupational Health

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1007/s11136-023-03513-yLicence: CC BY

Ashton2023VoRFinal published version, 1.26 MBLicence: CC BY

Cite this

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title = "Long COVID quality of life and healthcare experiences in the UK: a mixed method online survey",

abstract = "Purpose The complexity of long COVID and its diverse symptom profile contributes to unprecedented challenges for patients, clinicians, and healthcare services. The threat of long COVID remains ignored by Governments, the media and public health messaging, and patients{\textquoteright} experiences must be heard through understanding of the lived experience. This study aimed to understand the lived experience of those living with long COVID. Methods An online web-based survey was designed using Patient and Public Involvement and Engagement (PPIE) to increase understanding of the lived experiences of long COVID, and was distributed through PPIE groups, social media, and word of mouth. The survey used closed and open questions relating to demographics, pre- and post-COVID-19 health quality of life, daily activities and long COVID experiences. Results Within our sample of 132 people living with long COVID, the findings highlight that individuals are being severely impacted by their symptoms and are unable to or limited in participating in their daily activities, reducing quality of life. Long COVID places strain on relationships, the ability to live life fully and is detrimental to mental health. Varying health care experiences are described by participants, with reports of medical gaslighting and inadequate support received. Conclusions Long COVID has a severe impact on the ability to live life fully, and strains mental health. The appropriate mechanisms and support services are needed to support those living with long COVID and manage symptoms.",

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AU - Ashton, Ruth

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AU - Phillips, B. E.

AU - Yates, J.

AU - Thomas, Callum

AU - Ferraro, Francesco

AU - Bewick, T.

AU - Haggan, K.

AU - Faghy, Mark

N1 - © The Author(s) 2023 This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.

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Y1 - 2023/9/22

N2 - Purpose The complexity of long COVID and its diverse symptom profile contributes to unprecedented challenges for patients, clinicians, and healthcare services. The threat of long COVID remains ignored by Governments, the media and public health messaging, and patients’ experiences must be heard through understanding of the lived experience. This study aimed to understand the lived experience of those living with long COVID. Methods An online web-based survey was designed using Patient and Public Involvement and Engagement (PPIE) to increase understanding of the lived experiences of long COVID, and was distributed through PPIE groups, social media, and word of mouth. The survey used closed and open questions relating to demographics, pre- and post-COVID-19 health quality of life, daily activities and long COVID experiences. Results Within our sample of 132 people living with long COVID, the findings highlight that individuals are being severely impacted by their symptoms and are unable to or limited in participating in their daily activities, reducing quality of life. Long COVID places strain on relationships, the ability to live life fully and is detrimental to mental health. Varying health care experiences are described by participants, with reports of medical gaslighting and inadequate support received. Conclusions Long COVID has a severe impact on the ability to live life fully, and strains mental health. The appropriate mechanisms and support services are needed to support those living with long COVID and manage symptoms.

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KW - Pandemic

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