Patient Perspectives on the Care in a Long COVID Outpatient Clinic—A Regional Qualitative Analysis from Germany

Abstract

Background/Objectives: Long COVID specialized outpatient clinics (sOCs), which are part of the recommended long COVID care, usually face high demand. Few studies focused on the experience of care in such facilities in Germany. This study investigated how patients experience care in a sOC at a German university hospital. Methods: Semi-structured interviews were conducted with patients attending this clinic between October 2022 and January 2023. Data analysis was based on thematic analysis. Results: The themes from interviews with 14 patients (F = 11, M = 3) could be broadly categorized into statements on the pathway to the sOC, and statements on care provided in the sOC. Findings show that patients’ high expectations at the sOC appointment were shaped by previous experiences with care, which were mainly perceived as inadequate. Care in the sOC was predominantly perceived as competent, empathetic and relevant for further care and coping with the disease. A deterioration in health directly related to the consultation (classifiable as post-exertional malaise) was frequently described, as was a high need for ongoing consultation. Conclusions: Overall, the findings point to a need for adaptations in the sOC, such as identifying optimized models of care and tailoring them to the patients’ limited resources. This includes measures to improve care outside the sOC.

Full text

Academic Editor: Izolde Bouloukaki
Received: 26 February 2025
Revised: 30 March 2025
Accepted: 1 April 2025
Published: 3 April 2025
Citation: 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
Copyright: © 2025 by the authors.
Licensee MDPI, Basel, Switzerland.
This article is an open access article
distributed under the terms and
conditions of the Creative Commons
Attribution (CC BY) license
(https://creativecommons.org/
licenses/by/4.0/).
Article
Patient Perspectives on the Care in a Long COVID Outpatient
Clinic—A Regional Qualitative Analysis from Germany
Lea Alexandra Gölz 1, Regina Poß-Doering 1, Uta Merle 2, Michel Wensing 1and Sandra Stengel 1,*
1Department of Primary Care and Health Services Research, Heidelberg University Hospital,
Heidelberg University, 69120 Heidelberg, Germany; leagoelz@posteo.de (L.A.G.);
regina.poss-doering@med.uni-heidelberg.de (R.P.-D.); michel.wensing@med.uni-heidelberg.de (M.W.)
2Department of Internal Medicine IV, Heidelberg University Hospital, Heidelberg University,
69120 Heidelberg, Germany; uta.merle@med.uni-heidelberg.de
*Correspondence: sandra.stengel@med.uni-heidelberg.de
Abstract: Background/Objectives: Long COVID specialized outpatient clinics (sOCs),
which are part of the recommended long COVID care, usually face high demand. Few
studies focused on the experience of care in such facilities in Germany. This study
investigated how patients experience care in a sOC at a German university hospital.
Methods: Semi-structured interviews were conducted with patients attending this clinic
between October 2022 and January 2023. Data analysis was based on thematic analysis.
Results: The themes from interviews with 14 patients (F = 11, M = 3) could be broadly
categorized into statements on the pathway to the sOC, and statements on care provided
in the sOC. Findings show that patients’ high expectations at the sOC appointment were
shaped by previous experiences with care, which were mainly perceived as inadequate.
Care in the sOC was predominantly perceived as competent, empathetic and relevant for
further care and coping with the disease. A deterioration in health directly related to the
consultation (classifiable as post-exertional malaise) was frequently described, as was a
high need for ongoing consultation. Conclusions: Overall, the findings point to a need for
adaptations in the sOC, such as identifying optimized models of care and tailoring them to
the patients’ limited resources. This includes measures to improve care outside the sOC.
Keywords: post-COVID; outpatient clinic; specialist care; health systems research;
primary care
1. Introduction
Long COVID (LC) is characterized by symptoms that continue or develop after the
initial SARS-CoV-2 infection and last more than four weeks [
1
,
2
]. The term ‘long COVID’ is
not used consistently in studies or frameworks [
1
]. For example, according to the World
Health Organization’s more specific clinical case definition [
3
], the post-COVID condition
describes symptoms that usually occur three months after symptoms of SARS-CoV-2
infection and cannot be explained by any other diagnosis. Symptoms of LC can affect
the lungs, heart, immune system, nervous system and other organ systems, with fatigue,
cognitive impairment and psychological disturbances such as anxiety, depressive levels
and sleep disturbances being the most commonly reported [
4
]. There is also evidence
that myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may develop as a
particularly severe form of LC, which, in addition to fatigue, typically has a worsening of
symptoms after exercise, known as exercise intolerance, as a criterion [
5
–
14
]. Knowledge
about LC is currently accumulating rapidly [
15
]. Nevertheless, much remains to be learned
Healthcare 2025,13, 818 https://doi.org/10.3390/healthcare13070818

Healthcare 2025,13, 818 2 of 19
about its pathogenesis, treatment, and how best to optimize care [
16
], providing ongoing
challenges for patients, health care givers, and healthcare systems worldwide [17–23].
Most patients with LC experience impairments in their daily function, quality of life
and participation in social and work activities [
14
,
24
–
28
]. It can therefore be assumed that
LC has a significant effect on the health of the population [
26
]. In addition, those affected
face stigma [
29
]. It also has consequences for the economy: the gross value-added loss due
to LC is estimated at 5.7 billion euros for Germany [16,30].
A population-based study conducted in Germany reported that 6.5% of COVID-19
patients may have new symptoms six to twelve months after SARS-CoV-2 infection, leading
to at least moderate impairment of daily life and reduced health or working capacity [
31
].
The prevalence found is consistent with international findings [16].
Owing to its still unclear pathogenesis, the diagnosis of LC is based on certain criteria
related to symptoms and the exclusion of other causes [
1
,
32
]. Therapeutic evidence also
remains limited [
33
], leading to a lack of specific therapies, especially symptom-based
approaches [
5
,
34
,
35
]. There is uncertainty about recommendations for exercise and activity
in LC and ME/CFS. Study results show heterogeneous results with a not very robust study
situation [
36
,
37
]. On the one hand, study results suggest improvement with rehabilitation,
but on the other hand, there is also evidence of worsening of symptoms in terms of post-
exertional malaise in subgroups with overexertion. [8,34,36–42].
Nationally and internationally, multidisciplinary and cross-sectoral care is recom-
mended to address this complex illness entity [
14
,
18
,
43
–
46
]. In Germany, the guidelines for
long COVID [
14
,
47
] call for a stepped care approach: general practitioners (GPs) are the
first point of contact for patients and provide basic care in the sense of a generalist approach,
whereas specialized outpatient clinics should be available for severe and complex cases [
46
].
The latter continue to be in high demand in Germany [
48
] as well as internationally [
1
].
The tiered approach can also be found in other countries [1].
The challenges of managing LC in primary care, patients’ perceptions of inadequate
care, and the need for the integration of specialized care for LC have been extensively
studied internationally [
17
,
18
,
22
,
23
,
29
,
39
,
49
–
55
]. To the best of our knowledge, research on
the patient experience of LC care in specialized care settings is limited [
48
]. Therefore, the
aim of this study was to explore patients’ perspectives on their care in a specialized long
COVID outpatient clinic (sOC) at a university hospital in Germany.
2. Materials and Methods
2.1. Study Design
A cross-sectional, exploratory qualitative study design [
56
,
57
] with problem-centered,
semi-structured interviews [
58
] was chosen to collect the subjective and individual experi-
ences of patients in as much detail and differentiation as possible.
The reporting of the study is based on the Consolidated Criteria for Reporting Quali-
tative Research [
59
]; see Figure S1. Patients and the public were not involved in designing,
conducting, or analyzing the study.
2.2. Recruiting and Study Participation
Between 10 October 2022, and 3 January 2023, study participants were recruited at
a specialized long COVID outpatient clinic (sOC) of a university hospital in Germany,
which is part of a regional long COVID network. The sOC services consisted of a single
appointment that included the completion of questionnaires, tests (cognitive test, stress
test, handgrip test), laboratory tests, and a doctor–patient consultation. Two specialists
(internal medicine; general practice), a senior consultant, and a nurse were involved in
the sOC. The patient and the general practitioner received a physician’s letter with further

Healthcare 2025,13, 818 3 of 19
recommendations. If necessary, further referrals were made to other disciplines within the
institution. Initially, purposive sampling was intended to account for variance in sex, age,
place of residence and course of acute COVID-19 disease [
60
]. This strategy was changed to
convenience sampling on 12 October 2022 following a review of scheduled appointments in
the sOC in the following months and due to, therefore, anticipated difficulties in recruiting
a sufficient number of participants in a reasonable time [
60
]. During the recruitment period,
all patients coming in for their appointment were verbally informed about the study by
the sOC staff or the first author and received an invitation letter and an information leaflet
about the study. Patients who were interested in participation received more detailed
information in person or by telephone from the first author.
The participants gave their written informed consent and were reimbursed EUR 50
(funded by the Ministry of Science, Research and Arts of the State of Baden-Wuerttemberg,
no funding code).
Recruitment was scheduled to stop when saturation could be assumed. Based on field
notes, a comparison of interview content aspects and literature on saturation and sample
sizes in qualitative research was conducted [
61
,
62
]. Thematic saturation was to be assumed
when interviews had provided extensive information about the questions and aims of the
study and only minimal new information could be collected through further interviews.
Thus, and given the homogeneity of the study group, thematic saturation was assessed and
recruitment was stopped on 3 January 2023.
2.3. Data Collection
An anonymized written sociodemographic questionnaire was used to collect infor-
mation about the personal and life situations of the participants (age, gender, place of
residence, occupation, partner, care work), their COVID-19 experience (time and course of
the disease), their inability to work due to LC, their relationship with their GP, and their
functional status according to Klok et al. [63] before COVID-19 and at the current time.
Based on the theoretical background and current research, a semi-structured interview
guide was developed through a process of collecting, reviewing, sorting and subsuming
appropriate questions [
64
,
65
]. The thematic expertise of the first author, the methodological
expertise of the second author, and the qualitative and clinical expertise of the last author
were incorporated into the formulation of the questions. Owing to the high stress levels
of the target group, a separate piloting of the interview guide was deemed challenging
and potentially unethical. Therefore, the guide was piloted for comprehensibility and
practicality in the first two interviews. Subsequently, in collaboration with the first and
second author, the wording of specific passages where comprehension issues arose in the
interviews was slightly adjusted.
The following topics were covered by the guide: the diagnosis of LC, access to sOC,
experiences with and in the sOC, knowledge and experiences of the regional long COVID
network, and the recommended stepped care approach (Table S1).
The participants individually chose the mode of interview based on their personal
preference and capacities: telephone interview, video conference via the web conferencing
service of Heidelberg University’s computer center, face-to-face interview at the university
hospital or in their personal home environment. Participants had the option of taking
a break from the interview or continuing the interview on another day in order to be
consistent with their individual capacity and limits and to avoid being overloaded by their
participation in the study. No one other than the interviewer or the participant was present
during the face-to-face interviews, and no one else was present during the telephone and
video conference interviews, if this could be determined. The first author conducted all
interviews and took field notes in all cases. All interviews were recorded with a digital,

Healthcare 2025,13, 818 4 of 19
portable voice recorder, pseudonymized and transcribed verbatim using f4 transkript Edu
version 7.0.6 software in accordance with the institutional transcription guidelines. The
transcripts were not submitted to the participants for correction or comment.
2.4. Data Analysis
The sociodemographic data were analyzed via descriptive statistics via Microsoft
Office Professional Plus 2019 Excel software.
The qualitative data were organized and evaluated by the author according to Braun
and Clark’s reflexive thematic analysis [
65
], first on paper and then via MAXQDA Plus 2018
software (Release 18.2.4, Build 200406). Reflexive thematic analysis [
65
] was chosen because
of its flexibility allowing both inductive coding, in order to capture the patterned meaning
of the largely unknown individual patient experiences with their care in the sOC, and
deductive coding, to reflect the problem-centered nature of the interviews. The six phases
of thematic analysis (familiarizing with the data set; coding; generating initial themes;
developing and reviewing themes; refining, defining, and naming themes;
writing up
)
served as a guide for data analysis, which was not seen as a linear process, but as an
iterative one that could be adapted as needed.
Familiarity with the data was achieved through intensive and reflective engagement
with the data and the creation of notes and case summaries [
65
]. The first phase of data
analysis took place concurrently with recruitment and data collection. The participants’
individual experiences and perspectives of LC-related care were categorized into patterns.
The coding of three interviews was initially paper-based and inductive to identify
initial relevant aspects from the material. To take into account the problem-centered nature
of the interviews and the corresponding orientation of the interview guide, deductive
coding was then carried out until no further new codes were needed to capture relevant
aspects [
66
]. Initially, coding was mainly semantic [
65
] and then supplemented by latent
coding [
65
] to capture implicit statements. On the basis of the identified aspects, initial
themes related to the research question were identified, applied to the entire dataset via
MAXQDA Plus 2018 and differentiated several times in an iterative process (Supplementary
Material Table S2).
2.5. Reflexivity
The interviews were conducted and analyzed by the first author as part of her master’s
thesis (Bachelor of Science in Occupational Therapy and little experience in qualitative
research). All steps of the analysis were methodically supervised, and the themes and
codes generated were discussed by a senior researcher from the study team (SS, experi-
enced in qualitative research, and a physician in the sOC) in regular team meetings. In
research workshops held alongside the mast, the analysis steps and interim results were
also discussed with junior and senior researchers from the study team (RPD-health ser-
vices researcher, experienced in qualitative research; MW-health services researcher with
expertise in qualitative research). The participants were informed that the interviews and
primary data analysis were being conducted as part of a master’s thesis by a master’s stu-
dent who was not involved in providing care in the sOC and that there was no relationship
between the participants and the first author prior to the study.
3. Results
3.1. Sample Description
Fourteen of the twenty-nine invited people with LC, mostly females and middle-aged
individuals, took part in the study (Tables 1and 2). Acute COVID-19 was an average of
10.4 months prior to the study, and participants were predominantly moderately function-

Healthcare 2025,13, 818 5 of 19
ally impaired compared to the pre-COVID-19 situation where they were predominantly
functionally unimpaired (Table 2). One participant reported being additionally ill by the
effects of immunization against SARS-CoV-2. To maintain the pseudonymization of this
participant, given the subject matter of this paper, no statements related to this theme are
included below. Ten interviews were conducted by telephone, three by videoconference
and one in person at the Department of Primary Care and Health Services Research of the
University Hospital Heidelberg. The interviews lasted on average 53 min (min. 23 min,
max. 98 min). At the participants’ request, two interviews were split into two sessions,
one of
which was continued the following day and one after 28 days. Short breaks
(2–5 min)
were included in two interviews at the participants’ request.
Table 1. Sociodemographic characteristics of the study participants—part 1 (n = 14).
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 18 (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)
1meaning no contact with the healthcare system during COVID-19.
Table 2. Sociodemographic characteristics of the study participants–part 2 (n = 14).
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 12 4 3.1 (0.6) 3.0
Functional scale before COVID-19 0 1 0.1 (0.3) 0.0
1grade according to Klok et al. [63]; min. 0 ˆ=no functional limitations, max. 4 ˆ=severe functional limitations.
The results are reported descriptively along two key themes identified from the
data: pathway to the specialized long COVID outpatient clinic, and care provided in the
specialized long COVID outpatient clinic. Table 3provides an overview of the identified
key themes and sub-themes. The theme definition and anchor quotations can be found in
the appendix (Table S2). Participants’ quotes have been carefully translated and are cited
by interview number and line number.

Healthcare 2025,13, 818 6 of 19
Table 3. Themes and subthemes identified.
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
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
The majority of participants stated that access to providers from different groups and
sectors was characterized by waiting times of several months. Some participants expressed
not only understanding but also helplessness and disappointment at delays in diagnosis
and further care.
‘[
. . .
] you cannot get appointments with specialists anyway, so it does not go any further’.
(I03, line 221ff)
•Care experienced as inadequate
Some participants reported that they had experienced a lack of competence in LC
among healthcare providers from different professional groups and sectors. The perceived
lack of competence was often associated with their own resentment, uncertainty about
the further care process, and a worsening of their condition, as the expected help did not
materialize.
‘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)
Some participants expressed dissatisfaction with diagnostic and therapeutic inter-
ventions, describing overload reactions. Some stated that they felt left alone with their
complaints and not taken seriously by general practitioners, other specialists, or inpatient
rehabilitation. The latter was also described as ’medical gaslighting’ (I11, line 313).
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)

Healthcare 2025,13, 818 7 of 19
•Openness to long COVID
Some participants reported a willingness on the part of healthcare providers to be
involved in LC-related care. They stated that this was due to, among other things, carry-
ing out an exclusionary diagnosis, issuing prescriptions and referrals, and feeling taken
seriously and encouraged.
3.2.2. Own Initiative and Personal Responsibility
The majority of participants reported that they were actively involved in their LC care,
for example, by obtaining up-to-date information and advice on LC and passing it on to
GPs, taking a leading role in decisions about exclusionary diagnosis and specialist referrals,
and vocational rehabilitation. According to the participants, the idea of visiting the sOC
came mainly from themselves. Overall, some steps in the care process were initiated by the
participants, and the roles of patient and doctor were thus perceived as ‘reversed’ (I04, line 71 f).
The reasons given by the participants for their own initiative and the responsibility it
entailed were the perceived lack of competence of the care providers, their dissatisfaction
with previous care, and their desire for specialist advice in the face of symptoms that in
some cases had been increasing for months.
The participants’ perceptions of their own responsibilities varied widely. On the
positive side, they felt that by taking the initiative, they could rule out more dangerous
illnesses and avoid deterioration due to potentially harmful treatment options.
‘[
. . .
] 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)
It was criticized that personal initiative and responsibility required energy and re-
sources when the participants were ‘already weakened by their illness’ (I04, line 66). Notably,
there are numerous sources of information of varying quality: the line between scientifically
sound and nonserious information is ‘very, very thin’ (I12, line 308), and it is difficult to
understand and implement recommendations for action without professional support.
‘[
. . .
] 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
The majority of participants experienced a stepped care approach in their care process.
In general, participants welcomed the primary care provided by GPs, who were seen as the
‘linchpin’ (I04, line 448) of care, who know you and are available.
‘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)
However, the acceptance of this role for GPs in the context of LC was made contingent
on conditions that were described as inadequate in current care. GPs were criticized for
their perceived lack of competence and capacity to care for LC patients.
‘But then, I’m saying now, the general practitioners must also be obligated to deal with
the subject’.
(I10 lines 244 ff)

Healthcare 2025,13, 818 8 of 19
Finding a suitable GP and thus receiving adequate primary care was therefore a matter
of ‘luck’ (I09, line 235) or ‘bad luck’ (I14, line 310). The idea of an adaptive process in the care
structure also came up:
‘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
Participants’ expectations of their appointment at the outpatient clinic related to
comprehensive interdisciplinary diagnostics, including diagnosis and the issuing of a
medical report; the implementation of specific therapies, including participation in drug
trials or other experimental therapies; and the management of further personal care.
The sOC was seen as an institution with distinct expertise and a superior position to
general practitioners and other specialists and was of high personal relevance.
The sOC ‘was ultimately the last hope you could cling to, because there was nothing else’.
(I14, line 95 f)
Some participants had no expectations of their appointment in the sOC because they
did not feel able to cope with it due to their illness or because they were disappointed with
the care they had received.
‘[
. . .
] I did not have any expectations because I was simply disappointed with the care
situation in Germany anyway’.
(I13, line 46 f)
While participants reported that their expectations were largely met in general, those
regarding long-term follow-up and participation in drug or other therapy trials were not.
In addition, the expectations of other patients hoping for therapies to cure LC from
sOC were described as unfulfillable. The participants noted that it is important to consider
such expectations to avoid disappointment.
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
According to the participants, the time between the first attempt to contact the sOC and
the appointment ranged from four and a half to eleven months. Few participants accepted
the waiting time or would have expected it to be longer. Others perceived it negatively, for
example, as ’too long’ (I08, line 192) or ’very disappointing’ (I05, line 162), and described a delay
in the care process and a deterioration in their health during the waiting period.
‘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
From the participants’ point of view, the process of appointment at the sOC was made
more difficult by the need to visit several diagnostic departments, the distances involved
and the waiting times and was therefore also described as ‘a pain in the ass’ (I07, line 229).
Other participants described the process as orderly and structured, understood temporary
’confusion’ (I09, line 94) in the hospital procedures, or did not perceive waiting times as long.

Healthcare 2025,13, 818 9 of 19
With a total of four to six hours, the appointment usually lasted longer than the
participants expected and was compared to ‘marathons’ (I04, line 617). Breaks between
different examinations and discussions and opportunities to lie down were seen as positive
but also as insufficient. One positive aspect was that information about the condition,
questionnaires, and tips on how to prepare for the doctor’s consultation were emailed to
participants prior to the appointment, which was perceived as reassuring.
3.3.3. Experienced Competences
The participants perceived a ‘bundling of competences’ (I14, line 147) in the sOC due
to the LC-related knowledge, its application and the professional attitude of the staff.
Reference was given to the diagnostics carried out, the options and recommendations for
therapy discussed, and the communication and interaction with the participants.
‘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)
The participants welcomed this knowledge and expertise and therefore felt ‘very
relieved’ (I03, line 103), ‘in good hands’ (I04, line 342) and therefore ‘naturally also felt safe and
confident’ (I06, lines 190 f).
3.3.4. Differences from LC Care Outside of the Specialized Long COVID Outpatient Clinic
While few of the participants considered the measures taken in the sOC to be im-
plementable in the general practitioner setting or explicitly described no differences be-
tween the care inside and outside the sOC, others described the systematic diagnosis, the
well-founded therapy recommendations, an empathetic approach and the professional
knowledge of sOC employees as key differences in care. The sOC has time, money and
specific equipment that serves LC care and is lacking outside of the sOC.
‘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
The sOC appointment was described as stressful, in part because of the duration of
the appointment, the large number of perceived stimuli and stress caused by the diagnostic
measures, and the reduced ability to cope with stress due to illness.
‘(
. . .
), because any kind of stress or tension causes weakness and exhaustion and confuses
my nervous system’.
(I04, line 270 ff)
According to most participants, the effort led to an aggravation of existing symptoms
and severe exhaustion and even overload so that, in some cases, not all diagnostic measures
could be carried out or the participants were unable to actively participate in the discussion
with the doctor because of the preceding procedures.
‘[
. . .
] so the whole day was a complete border crossing for me. The biggest one I’ve ever had’.
(I11, line 107 f)

Healthcare 2025,13, 818 10 of 19
‘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)
Post-exertional malaise may result in the need to lie down or even the inability of
patients to leave the clinic on their own.
‘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)
However, the exertion has sometimes had a positive connotation, in the sense of being
‘glad this is being investigated’ (I03, line 84),or also because of the opportunity to show one’s
limitations.
‘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
In terms of the subsequent care process, the participants attached great importance
to the sOC doctor’s letter, as a written diagnosis from the sOC makes it possible to ap-
ply for support services and to declare LC as an occupational disease and was used in
communication with other caregivers.
Among other things, the sOC’s recommendations for further diagnosis, psychother-
apeutic support, self-management, and sociolegal support, as well as prescriptions for
remedies and assistive devices, gave the participants clarity about what to do next.
‘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
The current arrangement of the one-time appointment in the sOC did not correspond
to the idea of continuous support but rather gave the participants the feeling of being left
alone. Some participants found it helpful that it was still possible to contact the sOC by
email or telephone afterward.
‘[
. . .
] 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
Some participants thought that a second appointment three to twelve months after
the sOC would be useful if there were new findings, treatment recommendations or
‘recommendations for off-label or experimental drugs or treatments’ (I11, line 259 f.). It was
assumed that a new consultation would not be necessary if the doctor ‘implements the
recommendations of the post-COVID outpatient clinic well’ (I05, line 429 f).

Healthcare 2025,13, 818 11 of 19
3.3.7. Indications for an Appointment at a Specialized Long COVID Outpatient Clinic
Most participants would advise other LC patients to make an appointment at the sOC
‘as early as possible’ (I08, line 192; I10, line 210) up to a maximum of three months after the
onset of symptoms in the case of persistent complaints or a reduced capacity to act.
According to the participants, the reasons for this recommendation include the support
experienced in the sOC and that ‘you get the understanding that everyone wants’ (I05, line 302).
The participants noted that it was only possible to a limited extent to see other patients
in the sOC owing to the low capacity of the sOC and the function of the sOC as a ‘temporary,
scientific supporting institution’ (I14, line 272 f).
4. Discussion
4.1. Discussion of the Results
The aim of this qualitative study was to explore how patients experience LC care in
the sOC of a university hospital in Germany. The main findings emerged in the two main
themes ‘pathway to sOC’ and ‘care provided in the sOC’. Barriers to accessing care outside
the sOC were revealed, including a perceived lack of competence in the healthcare system,
underserved care, psychologization, and, as reported by some participants, openness on
the part of caregivers outside the sOC. Evaluations of the stepped care approach revealed
both potential strengths and, more importantly, perceived weaknesses. A predominantly
high degree of necessary self-initiative was described, sometimes resulting in ‘reversed’
roles of patients and physicians. Expectations related to the sOC were mainly based on
experiences outside the sOC, perceptions of continuing care in the sOC, participation in
studies, and the awareness of a lack of specific therapies. Positive aspects of the sOC
appointment included competence, empathy, and a systematic process of diagnosis and
treatment recommendations, which had a positive impact on further care in terms of having
a ‘roadmap’ and coping with the disease. The negative aspects included long waiting times,
long and overburdening appointments, and the single appointment strategy.
Participants’ experiences with care outside the sOC are consistent with extensive
findings in the literature [
54
], reflecting a consistent lack of knowledge among healthcare
providers [1,16,18,22,29,51,67].
These problems are well known from the treatment of other post-acute infectious
syndromes, such as ME/CFS, and persist here [
67
–
69
]. In a systematic review, von der
Lippe et al. [
70
] reported that people with rare diseases also experience a lack of knowledge
among health professionals, more often in primary care and less often in specialized settings,
which can result in incorrect treatment, delayed diagnosis, and refusal of social services.
Feelings of not being taken seriously, being left alone, and even being stigmatized were
also identified as key aspects of care that were perceived as inadequate and are also known
from other studies [67–69].
The theme ‘own initiative and personal responsibility’ aligns with previous studies
in the LC context [
18
,
51
], highlighting their relevance. The role reversal of GPs and
patients described by the participants can be discussed with respect to medical-sociological
considerations regarding the roles of patients and doctors. The doctor is usually attributed
to medical expertise [
71
–
75
]. The patient is associated with the use of medical services
and can act as an expert for his/her personal experience of illness [
76
–
78
]. This regular
understanding of roles contrasts with the roles that some participants in this study reported.
Again, there are parallels with rare disease patients, whom von Lippe et al. [
70
] call patient
experts, who often research on the internet, have more information about their illness than
professionals do, and develop “a feeling of being the best ones to make decisions about their
diagnosis and its treatment” [
70
] (p. 776). When patients perform tasks that are typically the
responsibility of a physician, it could have both positive and negative effects on navigation,

Healthcare 2025,13, 818 12 of 19
diagnosis, and therapy, including potentially a negative impact on patient safety.
One way
to use patient knowledge constructively would be to integrate it into tailored patient-
centered interventions [79].
Regarding the sOC, high expectations are related to the experienced undersupply
in the previous care context. However, the expectations are realistic and illustrate the
knowledge of the current lack of established specific therapies for LC [
16
,
33
], and the limited
capacity of comparable institutions, in keeping with the results of the literature [1,48].
The findings show that strengthening the primary care-based stepped care approach,
which is already internationally practiced [
1
,
47
,
54
], is necessary for the acceptance of care
outside the sOC and thus for care coordination. The reported limitation of sOC resources
in Germany reinforces this idea [
48
]. At the same time, it seems important to develop
further concepts for sOC that address the reported patients’ needs but also address the lack
of evidence for evaluating the effectiveness of LC care
models [1,16,39]
. Lessons learned
from other chronic care models can be incorporated into evaluation
designs [80–82]
. The
perceived expertise and empathic behavior of the care providers as well as the perceived
relevance of the appointment for further care management and for coping with the disease
explain the criticism of a GP-based stepped wedge approach, which is experienced by
most participants as inadequate, which is in line with the literature [
83
,
84
]. The knowl-
edge and competence gaps in the field of LC identified in the study, which have also
been documented internationally and persistently [
22
,
29
,
85
], highlight the urgent need for
appropriate continuing medical education for healthcare professionals, which is also being
addressed internationally [
1
,
16
]. In doing so, the challenges of ‘evolving knowledge’ need
to be addressed [
86
]. In addition to training healthcare professionals, educational measures
for patients could also help improve the quality of care [
87
] and thus close identified gaps
in care. Networks could constitute another approach to increase the competence and moti-
vation of primary care physicians in LC care and promote cross-sectoral knowledge transfer
and collaboration [
18
,
88
]. This could include, for example, telemedicine consultations or
boards [
39
]. A supporting element is described by Stallmach et al. in terms of mobile
primary healthcare for post-COVID patients in rural areas [89].
A central aspect that emerged from the interviews is the described deterioration of
health in direct connection with the appointment at the sOC, which in some cases led to the
termination of tests, the necessity to lie down, or even the lack of the possibility to leave
the sOC independently. The participants in this study experienced the process of visiting
the sOC as strenuous, overloading and exceeding the limits of their physical and mental
resources. These can be classified as post-exertional malaise, which is considered a common
symptom in LC [
90
] and one of the diagnostic criteria for ME/CFS [
8
,
14
,
91
,
92
]. Thus, there
is a clear clinical and ethical implication to adapt care and treatment models to an individu-
alized approach that takes into account functional limitations and
resources [36,37,42,92,93]
.
In the sOC, the care model should be more tailored to the patient’s needs and resources
to reduce or avoid overload. This study suggests the integration of telemedicine services
seems to be an appropriate way to provide options to adapt the level of effort to the indi-
vidual’s capacity. As described above, this can also be integrated into the collaboration
between primary and specialty care. This aligns with Germany’s current long COVID
guideline, a sub-statutory norm [
94
] and is identified by Chou et al. as a feature of LC
care models [
39
]. Other options for taking into account the limitations and resources of
patients in the sOC, based on the results of the study, could be to divide the appointment
into several sessions on different days, to outsource certain examinations (e.g., ECG) to
outpatient facilities, or to implement outreach care.

Healthcare 2025,13, 818 13 of 19
4.2. Strengths and Limitations
A strength of this cross-sectional exploratory study is that, owing to the theme-
generating approach to data analysis, the diversity of the aspects identified and the sample
size of 14 interviews, thematic data saturation can be assumed [
61
,
62
], and further inter-
views are not expected to identify any additional aspects in the target group. In addition,
the willingness to participate was high, with almost 50% of those invited taking part in
the study. In the German-speaking area, no further work on patient experiences in SOC is
known; thus, explorative work can provide initial hypotheses in this context.
Methodological limitations arise from (1) the shift from purposive to convenience
sampling, (2) the focus on a selected group of patients, namely, those who presented
themselves at the sOC, and (3) the focus on one institution and one model of care. As
a consequence of (1), it is possible that the results of the study are not representative
of the care experiences of all sOC patients, but are primarily those of patients who had
their appointment during the recruitment period, were interested in participating in the
study, and met the inclusion criteria [
60
,
95
]. Based on (2), it was not possible to obtain
the experiences of patients who felt well cared for in outpatient care or those who, owing
to severe functional limitations, were unable to present themselves in specialized care.
Due to (3), it is not possible at this time to say to what extent the concept of the sOC as
described differs at other institutions in Germany. These limitations (1–3) mean that the
respondents cannot be considered representative, and the results cannot be generalized, as
common in exploratory qualitative design. Furthermore, selection bias may have occurred
in that these patients may have agreed to participate in the study because they were
satisfied with the appointment. The breadth of the results, with both negative and positive
aspects, argues against this. Recall bias is possible due to the time lag between the sOC
appointment and the interview appointment, as well as possible impairments caused by
LC that affect memory [
96
]. The study only considered the patient’s perspective; therefore,
it is not possible to assess how providers would describe the situation. The interview data
were not triangulated with the questionnaire data in order to maintain the anonymity of
the questions and to reduce the risk of drawing conclusions about an individual. This
procedure means that the two sets of data stand alone, which could lead to a reduction in
their informative value.
4.3. Implications for Research and Practice
4.3.1. Implications for Research
Further health services research is needed to further evaluate and develop care provi-
sions within and outside the sOC, which is supported by the recommendations of patient
organizations [
97
]. The perspective of healthcare professionals involved should be added.
The GPs’ and the sOC staff’s view of responsibility in the care process as well as the
experience of the role can complement the patient’s perspective and thus allow a more
comprehensive view, for example, considering possible effects on patient safety and quality
of care. The potential impact of an appointment at the sOC on the further care process
and patient-relevant outcomes should be further investigated in an extended study design,
e.g., including quantitative surveys, and compared with regular outpatient care. Com-
parisons of different models of sOC services, including ambulatory models, and health
economic evaluations should be added. The experiences with sOC care of LC patients with
particularly severe symptoms should be explicitly added to tailor further development of
care structures to this group as well.

Healthcare 2025,13, 818 14 of 19
4.3.2. Implications for Practice
The results point to a clear need for action for care both inside and outside of the sOC;
for example, patient narratives could be iteratively used to improve patient-centeredness,
communication and quality of care and to empower patients and carers [
98
]. In addition,
patients’ perspectives could be integrated into quality improvement methods such as
quality improvement collaboratives [
99
], which have already been used in a UK study to
improve LC care, offering opportunities to involve providers and patients in this change
process [
100
]. The aforementioned approaches to cross-sector collaboration and considera-
tion of appropriate resource allocation should be incorporated into the overall model.
5. Conclusions
The results of this study show that patients’ experiences at different points in the
process of care in the sOC shape their expectations, experiences and anticipations of further
care. This suggests that care in the sOC cannot be considered and designed in isolation
but should be seen in the larger care context. Overall, the findings point to a need for
adaptations in the outpatient long COVID clinic, such as identifying optimized models
of care and tailoring them to the patient’s limited resources. This includes measures to
support and improve general practitioner-based stepped care.
Supplementary Materials: The following supporting information can be downloaded at https:
//www.mdpi.com/article/10.3390/healthcare13070818/s1: Figure S1: COREQ checklist; Table S1:
Interview guide; Table S2: Theme definition and anchor citations.
Author Contributions: All the authors contributed to the manuscript in accordance with the criteria
for authorship. Conceptualization, L.A.G., R.P.-D., U.M., M.W. and S.S.; data curation, L.A.G.; formal
analysis, L.A.G.; funding acquisition, U.M. and S.S.; investigation, L.A.G.; methodology, L.A.G.,
R.P.-D., U.M., M.W. and S.S.; project administration, S.S.; supervision, R.P.-D., U.M., M.W. and S.S.;
validation, L.A.G., R.P.-D. and S.S.; writing—original draft, L.A.G. and S.S.; writing—review and
editing, L.A.G., R.P.-D., U.M., M.W. and S.S. All authors have read and agreed to the published
version of the manuscript.
Funding: The incentives were funded by the Ministry of Science, Research and Arts of the State of
Baden-Wuerttemberg (no grant number).
Institutional Review Board Statement: The study was conducted in accordance with the Declaration
of Helsinki and approved by the Ethics Committee of the Medical Faculty of Heidelberg University,
Germany (protocol code: S-562/2022, date of approval: 30 August 2022). The study was registered in
the German Clinical Trial Register (DRKS-ID: DRKS00030194), and a UTN (U1111-1282-7438) was
obtained.
Informed Consent Statement: Informed written consent was obtained from all the subjects involved
in the study.
Data Availability Statement: The data presented in this study are available on request from the
corresponding author. The datasets generated and/or analyzed during the current study are not
publicly available because of assured data protection regulations. The raw data supporting the
conclusions of this article will be made available by the corresponding author upon request.
Acknowledgments: The authors would like to thank Karin Tarbet for her support in recruiting
patients for this study.
Conflicts of Interest: During data collection and analysis, Sandra Stengel worked as a specialist in the
institution whose patients’ perspectives were being studied. To minimize the development of biases,
Sandra Stengel was not involved in data collection and primary data analysis. During the study,
she regularly reflected on her own assumptions, experiences and different roles in this context to be
aware of various aspects influencing her perspective. During data collection and analysis, Uta Merle

Healthcare 2025,13, 818 15 of 19
worked as a senior physician and Karin Tarbet worked as a nurse in the institution whose patients’
perspectives were being studied. Uta Merle and Karin Tarbet were not involved in data collection
and in data analysis but only gave feedback and her consent on the conceptualization of the study
and on the manuscript. Karin Tarbet also supported the recruitment of the study participants. Sandra
Stengel and Uta Merle declare no further conflicts of interest. Lea Gölz, Regina Poß-Doering, and
Michel Wensing declare no conflicts of interest. The funders had no role in the design of the study; in
the collection, analysis, or interpretation of data; in the writing of the manuscript; or in the decision
to publish the results.
Abbreviations
The following abbreviations are used in this manuscript:
LC long COVID
GP general practitioner
sOC specialized long COVID outpatient clinic
ME/CFS myalgic encephalomyelitis/chronic fatigue syndrome
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