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 journalArticlepeer-review

5 Citations (Scopus)
1 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 languageEnglish
Pages (from-to)133-143
Number of pages11
JournalQuality of Life Research
Volume33
Issue number1
Early online date22 Sept 2023
DOIs
Publication statusE-pub ahead of print - 22 Sept 2023
Externally publishedYes

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

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