Patient Perspectives on the Care in a Long COVID Outpatient Clinic—A Regional Qualitative Analysis from Germany
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design
2.2. Recruiting and Study Participation
2.3. Data Collection
2.4. Data Analysis
2.5. Reflexivity
3. Results
3.1. Sample Description
3.2. Pathway to the Specialized Long COVID Outpatient Clinic
3.2.1. Care Outside the Specialized Long COVID Outpatient Clinic
- Access to healthcare providers
‘[…] you cannot get appointments with specialists anyway, so it does not go any further’.(I03, line 221ff)
- Care experienced as inadequate
‘I was actually very helpless because my GP did not know what to do, I did not know what to do, my physiotherapist did not know what to do >laughs<’.(I09, line 61 f)
A few participants reported that they did not feel that their symptoms could be consistently attributed to mental or psychosomatic illness in different care contexts.‘I was also a little scared [at the sOC appointment], because I had heard from many doctors before, especially in rehab, that they think it is more of a mental thing and actually all long COVID patients should go to psychosomatic medicine, because we cannot truly find anything’.(I09, line 67 ff)
- Openness to long COVID
3.2.2. Own Initiative and Personal Responsibility
‘[…] the rehab […] would definitely have had the potential to make me worse if I hadn’t already read a lot about it myself’.(I12, lines 53 ff)
‘[…] but that is not the goal, that […] the patient has to be so well informed that he knows exactly which specialists he needs to go to’.(I11, lines 335 ff)
3.2.3. Appraisal of the Stepped Care Approach
‘I mean, in terms of capacity, and, and on top of that, the GP is on site. (…). The GP knows you beforehand and can judge you quite well’.(I03, lines 283 ff)
‘But then, I’m saying now, the general practitioners must also be obligated to deal with the subject’.(I10 lines 244 ff)
‘In principle, it belongs there, with the idea that in ten years we will know as much about LC as we do about asthma and the common cold, and that it will be part of the standard repertoire of GP medical education. But we are not there yet’.(I14, lines 304 ff)
3.3. Care Provided in the Specialized Long COVID Outpatient Clinic
3.3.1. Expectations of the Appointment at the Specialized Long COVID Outpatient Clinic
‘[…] I did not have any expectations because I was simply disappointed with the care situation in Germany anyway’.(I13, line 46 f)
3.3.2. Process of Appointment at the Specialized Long COVID Outpatient Clinic
- Waiting time for the appointment at the specialized long COVID outpatient clinic
‘If I had come to you relatively early […] you could have reacted much earlier. And for me, it was like nine lost months’.(I10, line 235)
- Course and duration of the appointment at the specialized long COVID outpatient clinic
3.3.3. Experienced Competences
‘I found it very, very competent, dealing with long COVID, I had the impression that you are understood as a long COVID patient, that you simply have the chance to be heard, that these are people who are naturally familiar with the clinical picture, how you feel. There was also a lot of attention given to how you felt, and diagnostics were also carried out’.(I06, line 272 ff)
3.3.4. Differences from LC Care Outside of the Specialized Long COVID Outpatient Clinic
‘Therefore, I did not have to explain this to the doctor, but the doctor can now explain something to me about my illness. That was a big difference’.(I03, line 121 ff)
3.3.5. Consequences of Appointment at the Specialized Long COVID Outpatient Clinic
- Direct health consequences
‘(…), because any kind of stress or tension causes weakness and exhaustion and confuses my nervous system’.(I04, line 270 ff)
‘[…] so the whole day was a complete border crossing for me. The biggest one I’ve ever had’.(I11, line 107 f)
‘That’s just because, I had afterwards, it really took me more than a week, I really had such a weakness afterwards, I was really bad. So, because it’s, obvious, so many hours of such high tension and exertion had to, had to lead to a complete crash’.(I04, line 337 ff)
‘When I felt unwell, when I had a crash, they called my home and told them to come and pick me up’.(I13, line 138 ff)
‘But in retrospect, I actually thought it was pretty good that I was there on a day when there were so many symptoms, because it’s this, this fluctuating thing that makes it so hard to grasp’.(I12, line 189 ff)
- Consequences for further care
‘So, I have a roadmap and it is good that I now have something at hand and that it is also structured’.(I06, line 243 ff)
3.3.6. Single Appointment at the Specialized Long COVID Outpatient Clinic
- Evaluation of one-time appointments at the specialized long COVID outpatient clinic
‘[…] then you are alone again. So that is a basic principle of the illness, that you’re basically left alone. […]’.(I03, line 98 f)
- Possible reappointment at the specialized long COVID outpatient clinic
3.3.7. Indications for an Appointment at a Specialized Long COVID Outpatient Clinic
4. Discussion
4.1. Discussion of the Results
4.2. Strengths and Limitations
4.3. Implications for Research and Practice
4.3.1. Implications for Research
4.3.2. Implications for Practice
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Abbreviations
LC | long COVID |
GP | general practitioner |
sOC | specialized long COVID outpatient clinic |
ME/CFS | myalgic encephalomyelitis/chronic fatigue syndrome |
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n (%) | |
---|---|
Participants | 14 (100) |
Female | 11 (78.6) |
Male | 3 (21.4) |
Care during SARS-CoV-2-infection | |
inpatient and outpatient | 1 (7.1) |
Outpatient | 5 (35.7) |
neither inpatient nor outpatient 1 | 8 (57.1) |
Occupational situation | |
Employed | 12 (85.7) |
unable to work | 10 (71.4) |
professional background in healthcare | 4 (28.6) |
Residential area | |
rural residential area | 5 (35.7) |
urban residential area | 9 (64.3) |
Min | Max | Mean (SD) | Median | |
---|---|---|---|---|
Age (years) | 22 | 57 | 40.4 (11.8) | 40.5 |
Time between COVID-19 and study participation (months) | 4 | 29 | 10.4 (5.8) | 10.0 |
Current functional scale 1 | 2 | 4 | 3.1 (0.6) | 3.0 |
Functional scale before COVID-19 | 0 | 1 | 0.1 (0.3) | 0.0 |
Themes | Subthemes |
---|---|
Pathway to the specialized long COVID outpatient clinic | Care outside the specialized long COVID outpatient clinic |
Own initiative and personal responsibility | |
Appraisal of the stepped care approach | |
Care provided in the specialized long COVID outpatient clinic | Process of the appointment at the specialized long COVID outpatient clinic |
Experienced competences | |
Differences to LC care outside of the specialized long COVID outpatient clinic | |
Consequences of the appointment at the specialized long COVID outpatient clinic | |
Single appointment at the specialized long COVID outpatient clinic | |
Indications for an appointment at a specialized long COVID outpatient clinic |
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Gölz, L.A.; Poß-Doering, R.; Merle, U.; Wensing, M.; Stengel, S. Patient Perspectives on the Care in a Long COVID Outpatient Clinic—A Regional Qualitative Analysis from Germany. Healthcare 2025, 13, 818. https://doi.org/10.3390/healthcare13070818
Gölz LA, Poß-Doering R, Merle U, Wensing M, Stengel S. Patient Perspectives on the Care in a Long COVID Outpatient Clinic—A Regional Qualitative Analysis from Germany. Healthcare. 2025; 13(7):818. https://doi.org/10.3390/healthcare13070818
Chicago/Turabian StyleGölz, Lea Alexandra, Regina Poß-Doering, Uta Merle, Michel Wensing, and Sandra Stengel. 2025. "Patient Perspectives on the Care in a Long COVID Outpatient Clinic—A Regional Qualitative Analysis from Germany" Healthcare 13, no. 7: 818. https://doi.org/10.3390/healthcare13070818
APA StyleGölz, L. A., Poß-Doering, R., Merle, U., Wensing, M., & Stengel, S. (2025). Patient Perspectives on the Care in a Long COVID Outpatient Clinic—A Regional Qualitative Analysis from Germany. Healthcare, 13(7), 818. https://doi.org/10.3390/healthcare13070818