ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2024
Long COVID quality of life and healthcare experiences in the UK: a mixed method online survey.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
26 citing papers in PubMed, 2 syntheses or guidelines pooled it, 37 citations in OpenAlex.
- Exploring the influence of long COVID upon self-identity: a systematic literature review.Archives of public health = Archives belges de sante publique · 2026Pooled it
- Blood Biomarkers of Long COVID: A Systematic Review.Molecular diagnosis & therapy · 2024Pooled it
- Physical activity coaching programme for people with Long COVID: a pilot randomised clinical trial.Scientific reports · 2026Trial
- What do we know about medical invalidation and related concepts? - A scoping review and thematic analysis about the definitions, measurements, causes, consequences and potential solutions for medical invalidation.BMC health services research · 2026Article
- Medical invalidation is associated with structural barriers in postacute immune mediated syndromes based on patient perspectives in Germany.Scientific reports · 2026Article
- Perceptions, acceptability and experiences of yoga to support long-COVID: a survey of people living with long-COVID.BMC complementary medicine and therapies · 2026Article
- Healthcare Pathways of Patients with Long COVID in Austria: A Qualitative Exploration of Experiences, Barriers, and Needs.Journal of clinical medicine · 2026Article
- The next phase in Long COVID research: addressing the ethical challenges in trials of disease-modifying treatments.EClinicalMedicine · 2026Review
- How do people with post-COVID syndrome in Germany experience healthcare and information provision? A qualitative interview study.BMJ open · 2026Article
- Exploring the Intensity and Continuity of Hospital Care for Patients With Long Covid: Evidence From an English Urban Healthcare System.Health expectations : an international journal of public participation in health care and health policy · 2026Observational
- A Mixed-Methods Evaluation of a Post-COVID-Condition Rehabilitation and Recovery Intervention Delivered in a Football Club Community Trust.International journal of environmental research and public health · 2025Article
- Individuals' perceptions of Long Covid: a phenomenological approach to an online health community narratives.BMC health services research · 2025Article
- "A Light at the End of the Tunnel"-Post-COVID Condition and the Role of Rehabilitation and Recovery Intervention Delivered in a Football Club Community Trust: A Qualitative Study.Healthcare (Basel, Switzerland) · 2025Article
- Long COVID in healthcare workers: longitudinal mixed-methods study.Occupational medicine (Oxford, England) · 2025Article
- Healthcare Resource Utilization (HCRU) and Direct Medical Costs Associated with Long COVID or Post-COVID-19 Conditions: Findings from a Literature Review.Journal of market access & health policy · 2025Review
- Development of an expectation management intervention for patients with Long COVID: A focus group study with affected patients.PloS one · 2025Article
- Article
- Data, dialogue, and design: patient and public involvement and engagement for natural language processing with real-world cancer data.Frontiers in digital health · 2025Article
- Experiences of accessing primary care by those living with long Covid in New Zealand: A qualitative analysis.PloS one · 2025Article
- Sex-Based Differences in Pulmonary Function and Cardiopulmonary Response 30 Months Post-COVID-19: A Brazilian Multicentric Study.International journal of environmental research and public health · 2024Observational
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors at 4 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeThe 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.
methodsAn 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.
resultsWithin 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.
conclusionsLong 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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.