Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Internal Medicine Neurology Oncology Pediatrics Respiratory Medicine Surgery
Congress Coverage
2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress 2023 EHA Congress 2023 ASCO Annual Meeting

Keynote Webinar | Spotlight on Diet and Diabetes

Watch on-demand

An expert-led symposium exploring the prevention and management of type 2 diabetes through dietary interventions. 
ADVANCED SEARCH
Log in
Top
Quality of Life Research

Open Access 22-09-2023 | Long-COVID Syndrome

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

Authors: Rebecca Owen, Ruth E. Ashton, Lindsay Skipper, Bethan E. Phillips, James Yates, Callum Thomas, Francesco Ferraro, Tom Bewick, Kate Haggan, Mark A. Faghy

Published in: Quality of Life Research

Login to get access

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.
Appendix
Available only for authorised users
Literature
1.
2.
Faghy, M. A., Maden-Wilkinson, T., Arena, R., Copeland, R. J., Owen, R., Hodgkins, H., & Willmott, A. (2022). COVID-19 patients require multi-disciplinary rehabilitation approaches to address persisting symptom profiles and restore pre-COVID quality of life. Expert Review of Respiratory Medicine., 16, 1–6. CrossRef
3.
4.
Davis, H. E., Assaf, G. S., McCorkell, L., Wei, H., Low, R. J., Re’em, Y., Redfield, S., Austin. J, P., Akrami, A. (2021). Characterizing long COVID in an international cohort: 7 months of symptoms and their impact. EClinicalMedicine, 38, 101019. PubMedPubMedCentralCrossRef
5.
Hayes, L. D., Ingram, J., & Sculthorpe, N. F. (2021). More than 100 persistent symptoms of SARS-CoV-2 (long COVID): A scoping review. Frontier in Medicine (Lausanne), 8, 750378.
6.
Kingstone, T., Taylor, A. K., O’Donnell, C. A., Atherton, H., Blane, D. N., & Chew-Graham, C. A. (2020). Finding the “right” GP: A qualitative study of the experiences of people with long-COVID. BJGP Open., 4(5), bigpopen20X101143. CrossRef
7.
Vaes, A. W., Goërtz, Y. M. J., Van Herck, M., Machado, F. V. C., Meys, R., Delbressine, J. M., Houben-Wilke, S., Gaffron, S., Maier, D., Burtin, C., Posthuma, R., van Loon, N. P. H., Franssen, F. M. E., Hajian, B., Simons, S. O., van Boven, J. F. M., Klok, F. A., Spaetgens, B., Pinxt, C. M. H., Liu, L. Y. L., Wesseling, G., Spies, Y., Vijlbrief, H., van ’t Hul, A. J., Janssen, D. J. A., & Spruit, M. A. (2021). Recovery from COVID-19: a sprint or marathon? 6-month follow-up data from online long COVID-19 support group members. ERJ Open Research, 7(2), 00141–02021. https://​doi.​org/​10.​1183/​23120541.​00141-2021. PubMedPubMedCentralCrossRef
8.
9.
10.
Greenhalgh, T., Knight, M., A’Court, C., Buxton, M., & Husain, L. (2020). Management of post-acute covid-19 in primary care. BMJ, 370, m3026. PubMedCrossRef
11.
Maitra, A., & Verghese, A. (2021). Diagnosis and the illness experience: Ways of knowing. JAMA, 326(19), 1907–1908. PubMedCrossRef
12.
Faghy, M. A., Ashton, R. E. M., Maden-Wilkinson, T. M., Copeland, R. J., Bewick, T., & Smith, A. (2020). M Loosemore Integrated sports and respiratory medicine in the aftermath of COVID-19. The Lancet Respiratory Medicine, 8(9), 852. PubMedPubMedCentralCrossRef
13.
McCorkell, L., Assaf, G. S., Davis, H. E., Wei, H., & Akrami, A. (2021). Patient-led research collaborative: Embedding patients in the Long COVID narrative. PAIN Reports., 6(1), e913. PubMedPubMedCentralCrossRef
14.
15.
Greenhalgh, T., Snow, R., Ryan, S., Rees, S., & Salisbury, H. (2015). Six ‘biases’ against patients and carers in evidence-based medicine. BMC Medicine, 13(1), 200. PubMedPubMedCentralCrossRef
16.
Bellman, L. (2007). Research for patient benefit—The view from the top: An interview with Professor Celia Davies. Journal of Research in Nursing, 12(4), 417–425. CrossRef
17.
Gorna, R., MacDermott, N., Rayner, C., O’Hara, M., Evans, S., Agyen, L., Nutland, W., Rogers, N., & Hastie, C. (2021). Long COVID guidelines need to reflect lived experience. Lancet., 397(10273), 455–457. PubMedCrossRef
18.
Hoddinott, P., Pollock, A., O’Cathain, A., Boyer, I., Taylor, J., MacDonald, C., Oliver, S., & Donovan, J. L. (2018). How to incorporate patient and public perspectives into the design and conduct of research. F1000Research, 7, 752. PubMedPubMedCentralCrossRef
19.
Macpherson, K., Cooper, K., Harbour, J., Mahal, D., Miller, C., & Nairn, M. (2022). Experiences of living with long COVID and of accessing healthcare services: A qualitative systematic review. British Medical Journal Open, 12(1), e050979.
20.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. CrossRef
21.
22.
23.
Rees, J., O’boyle, C., & Macdonagh, R. (2001). Quality of life: Impact of chronic illness on the partner. Journal of the Royal Society of Medicine, 94(11), 563–566. PubMedPubMedCentralCrossRef
24.
Golics, C. J., Basra, M. K., Finlay, A. Y., & Salek, S. (2013). The impact of disease on family members: A critical aspect of medical care. Journal of the Royal Society of Medicine, 106(10), 399–407. PubMedPubMedCentralCrossRef
25.
26.
Van de Vyver, J., Leite, A. C., & Alwan, N. A. (2021). Navigating the social identity of long covid. BMJ, 375, n2933. PubMedCrossRef
27.
28.
Au, L., Capotescu, C., Eyal, G., & Finestone, G. (2022). Long covid and medical gaslighting: Dismissal, delayed diagnosis, and deferred treatment. SSM Qualitative Research Health, 2, 100167. CrossRef
29.
Sweet, P. L. (2019). The sociology of gaslighting. American Sociological Review, 84(5), 851–875. CrossRef
30.
31.
Bai, F., Tomasoni, D., Falcinella, C., Barbanotti, D., Castoldi, R., Mulè, G., Augello, M., Mondatore, D., Allegrini, M., Cona, A., Tesoro, D., Tagliaferri, G., Viganò, O., Suardi, E., Tincati, C., Beringheli, T., Varisco, B., Battistini, C. L., Piscopo, K., & d’ArminioMonforte, A. (2022). Female gender is associated with long COVID syndrome: a prospective cohort study. Clinical Microbiology and Infection, 28(4), 611–611. CrossRef
32.
Ladds, E., Rushforth, A., Wieringa, S., Taylor, S., Rayner, C., Husain, L., & Greenhalgh, T. (2020). Persistent symptoms after Covid-19: Qualitative study of 114 “long Covid” patients and draft quality principles for services. BMC Health Services Research, 20(1), 1144. PubMedPubMedCentralCrossRef
33.
Rubin, R. (2020). As their numbers grow, COVID-19 “Long Haulers” stump experts. JAMA, 324(14), 1381–1383. PubMedCrossRef
34.
Miyake, E., & Martin, S. (2021). Long Covid: Online patient narratives, public health communication and vaccine hesitancy. Digital Health, 7, 20552076211059650. PubMedPubMedCentralCrossRef
35.
36.
Malterud, K. (2000). Symptoms as a source of medical knowledge: Understanding medically unexplained disorders in women. Family Medicine, 32(9), 603–611. PubMed
37.
Natvig, B., Nessiøy, I., Bruusgaard, D., & Rutle, O. (1995). Musculoskeletal symptoms in a local community. The European Journal of General Practice, 1(1), 25–28. CrossRef
38.
Lewis, S., Willis, K., Franklin, M., & Smith, L. (2022). Challenging times: Disconnects between patient and professional temporalities in chronic condition management. Critical Public Health, 32(4), 438–449. CrossRef
39.
Johansson, E. E., Hamberg, K., Lindgren, G., & Westman, G. (1996). “I’ve been crying my way”—Qualitative analysis of a group of female patients’ consultation experiences. Family Practice, 13(6), 498–503. PubMedCrossRef
40.
Eccleston, C., Williams, A. C., & Rogers, W. S. (1997). Patients’ and professionals’ understandings of the causes of chronic pain: Blame, responsibility and identity protection. Social Science and Medicine, 45(5), 699–709. PubMedCrossRef
41.
42.
Sharpe, M., Mayou, R., Seagroatt, V., Surawy, C., Warwick, H., Bulstrode, C., Dawber, R., & Lane, D. (1994). Why do doctors find some patients difficult to help? The Quarterly Journal of Medicine, 87(3), 187–193. PubMed
43.
Wong, T. L., & Weitzer, D. J. (2021). Long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)—A systemic review and comparison of clinical presentation and symptomatology. Medicina (Kaunas, Lithuania), 57(5), 418. PubMedCrossRef
44.
Oronsky, B., Larson, C., Hammond, T. C., Oronsky, A., Kesari, S., Lybeck, M., & Reid, T. R. (2021). A review of persistent post-COVID syndrome (PPCS). Clinical Reviews in Allergy & Immunology., 64, 66–74. CrossRef
45.
Doykov, I., Hällqvist, J., Gilmour, K. C., Grandjean, L., Mills, K., & Heywood, W. E. (2020). ’The long tail of Covid-19’—The detection of a prolonged inflammatory response after a SARS-CoV-2 infection in asymptomatic and mildly affected patients. F1000Research, 9, 1349. PubMedCrossRef
46.
Twomey, R., DeMars, J., Franklin, K., Culos-Reed, S. N., Weatherald, J., & Wrightson, J. G. (2022). Chronic fatigue and postexertional malaise in people living with long COVID: An observational study. Physical Therapy, 102(4).
47.
Twisk, F. N., & Maes, M. (2009). A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS. Neuro Endocrinology Letters, 30(3), 284–299. PubMed
48.
Kindlon, T. (2017). Do graded activity therapies cause harm in chronic fatigue syndrome? Journal of Health Psychology, 22(9), 1146–1154. PubMedCrossRef
49.
Torjesen, I. (2020). NICE backtracks on graded exercise therapy and CBT in draft revision to CFS guidance. BMJ, 371, m4356. PubMedCrossRef
50.
Torjesen, I. (2020). NICE cautions against using graded exercise therapy for patients recovering from covid-19. BMJ, 370, m2912. PubMedCrossRef
51.
Faghy, M. A., Arena, R., Stoner, L., Haraf, R. H., Josephson, R., Hills, A. P., Dixit, S., Popovic, D., Smith, A., Myers, J., Bacon, S. L., Niebauer, J., Dourado, V. Z., Babu, A. S., Maden-Wilkinson, T. M., Copeland, R. J., Gough, L. A., Bond, S., Stuart, K., & Ashton, R. E. M. (2021). The need for exercise sciences and an integrated response to COVID-19: A position statement from the international HL-PIVOT network. Progress in Cardiovascular Disease, 67, 2–10. CrossRef
52.
Arena, R., & Lavie, C. J. (2021). The global path forward—Healthy Living for Pandemic Event Protection (HL – PIVOT). Progress in Cardiovascular Diseases, 64, 96–101. PubMedCrossRef
53.
McLellan, A., & Abbasi, K. (2022). The NHS is not living with covid, it’s dying from it. BMJ, 378, o1779. PubMedCrossRef
54.
Mahase, E. (2021). Most deprived areas in England have fastest growing waiting lists, says think tank. BMJ, 374, n2373. PubMedCrossRef
55.
56.
57.
Bagenal, J. (2022). The delivery plan for tackling the covid-19 backlog of elective care falls short. BMJ, 377, o995. PubMedCrossRef
58.
Pearson, M., Singh, P., Bartel, H., Crawford, P., & Allsopp, G. (2022). Creative long Covid: A qualitative exploration of the experience of long Covid through the medium of creative narratives. Health Expectations., 25(6), 2950–2959. PubMedPubMedCentralCrossRef
Metadata
Title
Long COVID quality of life and healthcare experiences in the UK: a mixed method online survey
Authors
Rebecca Owen
Ruth E. Ashton
Lindsay Skipper
Bethan E. Phillips
James Yates
Callum Thomas
Francesco Ferraro
Tom Bewick
Kate Haggan
Mark A. Faghy
Publication date
22-09-2023
Publisher
Springer International Publishing
Published in
Quality of Life Research
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-023-03513-y