ArticleBMC health services research2023
"There is no one who helps you with it": experiences of people with long COVID regarding medical care, therapeutic measures, and barriers in the German healthcare system: results of a qualitative study with four focus groups.
Article in BMC health services research, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 28 papers, 2 of them syntheses that pooled it.
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Who cites it
28 citing papers in PubMed, 2 syntheses or guidelines pooled it, 35 citations in OpenAlex.
- Factors influencing work ability and return-to-work in individuals affected by post-COVID: a systematic review.BMC public health · 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
- Integrative multimodal treatment approach for patients suffering from Post-COVID syndrome: a study based on qualitative interviews with individuals participating in an 11-week day clinic program.Frontiers in public health · 2025Trial
- Trial
- [An insight into the long/post COVID care situation in Germany-a rapid scoping review].Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz · 2026Review
- Medical invalidation is associated with structural barriers in postacute immune mediated syndromes based on patient perspectives in Germany.Scientific reports · 2026Article
- Longitudinal observation of persistent Long COVID symptoms and health-related quality of life in an adult German cohort.BMC infectious diseases · 2026Observational
- Care Pathways and Patient Experiences Among Patients With Post COVID-19 Condition: Study Protocol for a Mixed-Methods Study in Germany.JMIR research protocols · 2026Article
- App-based self-management program for people dealing with fatigue and trouble concentrating (DiEgO): protocol for participatory development, pilot testing, and qualitative process evaluation.Pilot and feasibility studies · 2026Article
- [Inflammatory rheumatic diseases in patients with post-COVID syndrome].Zeitschrift fur Rheumatologie · 2026Article
- Observational
- How do people with post-COVID syndrome in Germany experience healthcare and information provision? A qualitative interview study.BMJ open · 2026Article
- Article
- Experiences and coping strategies among patients with mild COVID-19 who develop post COVID conditions at a primary care centre.Scientific reports · 2026Article
- Improving the care of people affected by post-COVID syndrome (LCovB):study protocol of a mixed-methods study.PloS one · 2026Article
- Article
- Illness Experiences of Veterans Reporting Long-Term Symptoms or Health Challenges from COVID-19: Results from the VA COVID-19 Observational Research Collaboratory.Journal of general internal medicine · 2025Article
- Barriers, facilitators, and the role of central coordination: understanding long COVID-19 healthcare access in a universal healthcare system.Archives of public health = Archives belges de sante publique · 2025Article
- Self-reported Health Service Utilization and Barriers to Care Among US Adults with a History of Post COVID-19 Condition.Journal of general internal medicine · 2025Article
- Article
Corrections and comments
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Authors and funding
10 authors at 2 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundMany people experience long-term symptoms such as fatigue, cognitive problems, or shortness of breath after an acute infection with COVID-19. This emerging syndrome, known as long COVID, is new and complex in many aspects. This study aims to collect the experiences of people with long COVID with ambulatory healthcare structures.
methodsFour focus groups were conducted with a total of 23 adults with long COVID in June and July 2022. These discussions were audio-recorded, subsequently transcribed, and analyzed using the qualitative content analysis of Mayring and Kuckartz.
resultsFourteen out of 19 participants who had a primary care encounter regarding their long COVID symptoms did not perceive it as helpful. Many respondents reported that their general practitioners did not take their long COVID symptoms seriously and did not refer them to specialists or made therapeutic recommendations. However, some participants reported that they were prescribed non-pharmaceutical therapies (e.g., group meetings supported by psychotherapists, occupational therapy, etc.) that improved their condition. 14 of 23 respondents perceived care barriers such as providers' lack of awareness of long COVID, poor access to specialists, a lack of specialized care (e.g., long COVID clinics), or high bureaucratic hurdles for specific healthcare services. To improve medical care, participants suggested campaigns to raise awareness of long COVID among healthcare providers and the general population, increase research and government investments regarding the development of treatment structures for long COVID, expanding existing therapeutic services, and establishing one-stop shops for integrated specialist healthcare for people with long COVID.
conclusionsSeveral implications for healthcare professionals and policymakers can be derived from this study: (1) general practitioners should take the symptoms of long COVID seriously, assume a care coordinating role, make referrals, and establish contact with long COVID clinics; (2) care planners should focus on developing interprofessional evidence-based care and treatment approaches for long COVID; (3) existing care structures such as long COVID outpatient clinics should be expanded. The overarching goal must be to develop consistent guidelines for long COVID diagnosis, care, and treatment.
trial registrationThe study is registered in the German register for clinical trials (DRKS00026007, first registration on 09/09/2021).
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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.