Observational studyBMJ open2023
Lived experience of patients with Long COVID: a qualitative study in the UK.
Observational study in BMJ open, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04649957 (Profiling the Determinants of Recovery to Establish Novel Rehabilitation Guidelines to Improve Clinically Relevant and Patient-reported Outcomes in the Post-COVID-19 Period), which is not on this map. Cited by 30 papers, 4 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.
Profiling the Determinants of Recovery to Establish Novel Rehabilitation Guidelines to Improve Clinically Relevant and Patient-reported Outcomes in the Post-COVID-19 Period
Who cites it
30 citing papers in PubMed, 4 syntheses or guidelines pooled it, 80 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
- Patient and Professional Perspectives on Long COVID: A Systematic Literature Review and Meta-Synthesis.International journal of environmental research and public health · 2025Pooled it
- Health-related quality of life in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Post COVID-19 Condition: a systematic review.Journal of translational medicine · 2025Pooled 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
- Antiviral Antibody Fc Dysfunction Is Linked to Increased IgG1 Fucosylation in Long COVID.medRxiv : the preprint server for health sciences · 2026Article
- Current status and future perspectives on the mechanistic and pathophysiological understanding of long COVID.Communications medicine · 2026Article
- Weathering the Double Storm-Resilience in Chinese Older Cancer Patients With Long COVID: A Qualitative Study.Journal of advanced nursing · 2026Article
- Submaximal 2-day cardiopulmonary exercise testing to assess exercise capacity and post-exertional symptom exacerbation in people with long COVID.Experimental physiology · 2026Article
- Rapid Qualitative Approaches in Pandemic Research: Protocol for an Exploratory Qualitative Multimethod Study (VERDIQual) on Mpox in Italy, Nigeria, Thailand, and the United Kingdom.JMIR research protocols · 2026Article
- Experiences of People With Long COVID Accessing Rehabilitation Services: A Qualitative Study.Occupational therapy international · 2026Article
- Impact of Post-COVID Syndrome on Cardiorespiratory Fitness, Psychological Well-Being, and Quality of Life in Adolescents: A Cross-Sectional Study.Pulmonary medicine · 2026Article
- Understanding Long COVID Among Young People in Victoria, Australia: Prevalence, Impact, and Associated Factors.Public health challenges · 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
- Codeveloping a Novel Intervention for People With Post-COVID Condition: The Balance-ACT Study.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Assessing the Impact of Post-COVID Clinics on 6-Month Health Care Utilization for Patients With Long COVID: A Single-Center Experience.Mayo Clinic proceedings. Innovations, quality & outcomes · 2025Article
- 'The Second Arrow': A Collaborative Autoethnographic Exploration of What Can Be Learned From One Long COVID Journey.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Understanding post-hospitalised patients' experiences of long COVID - the PELCO study.Journal of health psychology · 2025Article
- Profiling the persistent and episodic nature of long COVID symptoms and the impact on quality of life and functional status: a cohort observation study.Journal of global health · 2025Observational
- Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 2 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundLong COVID is a rapidly evolving global health crisis requiring interdisciplinary support strategies that incorporate the lived experience of patients. Currently, there is a paucity of research documenting the day-to-day experiences of patients living with Long COVID.
objectiveTo explore the lived experience of Long COVID patients. STUDY
designLongitudinal, observation study.
settingAn inductive, data-driven, qualitative approach was used to evaluate hand-written diaries obtained from individuals who had been referred to a Derbyshire Long COVID clinic.
participants12 participants (11 females, age 49±10 years, 11 Caucasians) were recruited. Participants were included if they had a previous confirmed or suspected COVID-19 infection with ongoing recovery, >18 years old, understood the study requirements and provided informed consent.
methodParticipants were directed to complete self-report diaries over 16 weeks. Responses were transcribed verbatim and analysed using thematic analysis.
resultsThree key themes were highlighted: (1) understanding who helps patients manage symptoms, (2) daily activities and the impact on quality of life and health status and (3) the effect of turbulent and episodic symptom profiles on personal identity and recovery.
conclusionsThe novel challenges presented by Long COVID are complex with varying inter-related factors that are broadly impacting functional status and quality of life. Support mechanisms must incorporate the lived experiences and foster true collaborations between health professionals, patients and researchers to improve patient outcomes. TRIAL REGISTRATION NUMBER: NCT04649957.
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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.