Laestadius et al. BMC Medicine (2024) 22:243
https://doi.org/10.1186/s12916-024-03465-1

BMC Medicine

RESEARCH ARTICLE

Open Access“The dream is that there’s one place yougo”: a qualitative study of women’s experiences
seeking care from Long COVID clinics in the USA
Linnea I. Laestadius1*, Jeanine P. D. Guidry2, Megan M. Wahl1, Paul B. Perrin3, Kellie E. Carlyle4, Xiaobei Dong1,
Raouf Gharbo5 and Celeste Campos‑Castillo6

Abstract
Background Seeking and obtaining effective health care for Long COVID remains a challenge in the USA. Women
have particularly been impacted, as they are both at higher risk of developing Long COVID and of facing genderedbarriers to having symptoms acknowledged. Long COVID clinics, which provide multidisciplinary and coordinatedcare, have emerged as a potential solution. To date, however, there has been little examination of U.S. patient experi‑
ences with Long COVID clinics and how patients may or may not have come to access care at a Long COVID clinic.
Methods We conducted semi-structured interviews with 30 U.S. women aged 18 or older who had experienced
Long COVID symptoms for at least 3 months, who had not been hospitalized for acute COVID-19, and who had seenat least one medical provider about their symptoms. Participants were asked about experiences seeking medical carefor Long COVID. Long COVID clinic-related responses were analyzed using qualitative framework analysis to identify
key themes in experiences with Long COVID clinics.
Results Of the 30 women, 43.3% (n = 13) had been seen at a Long COVID clinic or by a provider affiliated with a Long
COVID clinic and 30.0% (n = 9) had explored or attempted to see a Long COVID clinic but had not been seen at timeof interview. Participants expressed five key themes concerning their experiences with seeking care from Long
COVID clinics: (1) Access to clinics remains an issue, (2) Clinics are not a one stop shop, (3) Not all clinic providers
have sufficient Long COVID knowledge, (4) Clinics can offer validation and care, and (5) Treatment options are criticaland urgent.
Conclusions While the potential for Long COVID clinics is significant, findings indicate that ongoing barriers
to care and challenges related to quality and coordination of care hamper that potential and contribute to distressamong women seeking Long COVID care. Since Long COVID clinics are uniquely positioned and framed as being
the place to go to manage complex symptoms, it is critical to patient wellbeing that they be properly resourced
to provide a level of care that complies with emerging best practices.
Keywords Long COVID, Women, Qualitative, Post COVID, Access to care, Quality of care

*Correspondence:
Linnea I. Laestadius
LLaestad@uwm.edu
Full list of author information is available at the end of the article© The Author(s) 2024. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which
permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to theoriginal author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images orother third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line
to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory
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Laestadius et al. BMC Medicine (2024) 22:243

BackgroundIn addition to posing significant acute health risks,
COVID-19 has been linked to the condition known
as Long COVID or post-acute sequelae of COVID-19(PASC) [1]. The prevalence of Long COVID is notably
high [2, 3], with recent estimates between 11 and 15%
among U.S. adults who tested positive for COVID-19 [4,5]. Women are at higher risk of Long COVID symptoms
than men [3, 4, 6], with data from the U.S. Household
Pulse Survey (HPS) indicating that 13.8% of women who
ever had COVID-19 were actively experiencing Long
COVID symptoms in January 2024 [7]. Long COVID
can cause respiratory, vascular, neurological, digestive,
and immune symptoms, among others [8–10]. Thosewith Long COVID report low health-related quality oflife. High rates of missed working days due to fatigue,
and significant limitations to their daily activities [5, 11,12]. Despite the significant nature of Long COVID symptoms, seeking and obtaining effective health care has
been a frequent challenge and source of distress [13–16].
Long COVID clinics, which provide multidisciplinary
and coordinated care for those with Long COVID [17],have emerged as a potential solution given the multiple
organ symptoms impacted [18–20]. Healthcare providers who themselves have been diagnosed with Long
COVID have also stressed the importance of a “one-stopshop” for Long COVID [21]. To date, however, there has
been little examination of U.S. patient experiences withLong COVID clinics and how patients may or may nothave come to access care at a Long COVID clinic. In September 2023, the U.S. Department of Health and Human
Services allocated nine grant awards to expand multidisciplinary Long COVID clinics, particularly in underserved areas [17]. More research is needed to understandpatient preferences and experiences for accessing Long
COVID clinics to better inform Long COVID clinic procedures and practices.
While scant, there is some research on patient experiences with Long COVID clinics, often arising in explorations of barriers to Long COVID care more broadly.
A study about COVID-19 and mental health [13] foundthat while patients in the UK were broadly aware thatsuch clinics existed, they were confused about the referral process and felt that they lacked clinics in their area.
A diary study of twelve patients at a UK Long COVID
clinic also found that patients were frustrated by wait
times but appreciated referrals for care [22]. Garg et al.
[23] administered a survey on perceptions at a single
Long COVID clinic in the USA in 2021, finding that whilemost patients were satisfied and appreciated having theirexperiences validated, they reported long wait times andtravel distances as well as scheduling and financial barriers to seeing clinic-referred specialists. German Long

Page 2 of 13

COVID patients have reported both a lack of clinics andbureaucratic barriers to being seeing by Long COVID
clinics [24]. Clinic leads report that a lack of establishedtreatment protocols and insufficient staffing present barriers to care [25].
Understanding obstacles and limitations such as theseis critical, not just in light of increased federal fundingfor Long COVID clinics, but also because Long COVID
clinics have a tremendous potential for meeting patientneeds by providing multidisciplinary and integrated carein a single location [21, 26]. The importance of specialty
clinics, despite current limitations, must also be considered within the context of a health care system in which
only 28% of U.S. physicians felt very or somewhat confident treating patients with Long COVID in 2022 [27].
When new evidence-based guidelines and treatments
become available, Long COVID clinics will be particularly well positioned to implement them. Further
research is thus needed to understand current experiences with U.S. Long COVID clinics and how they could
be strengthened, particularly for women as they are bothat higher risk of Long COVID and at higher risk of facing
gendered barriers to having symptoms taken seriously by
medical providers [3, 28, 29]. Therefore, this study conducted semi-structured interviews to examine women’s
experiences seeking care from U.S. Long COVID clinics
and how they may or may not have successfully accessedsuch care.

Methods
To be eligible, participants had to identify as a woman
aged 18 or older who resided in the USA, had experienced Long COVID symptoms at the time of recruitment
for at least 3 months, had not been hospitalized for acute
COVID-19, and had seen at least one medical provider
about their Long COVID symptoms.
We recruited participants between January 2023 andMay 2023 from emails collected in a prior online panel
survey study about Long COVID care experiences, email
outreach through the team’s professional and personal
networks, and unpaid social media posts on Twitter (nowknown as X), Reddit (r/womenshealth, r/samplesize, r/
COVIDsupport), Instagram, Mastodon, and Facebook(“COVID 19 research involvement group”). Social media
posts and emails linked to an online survey we createdusing the Qualtrics survey platform to screen for eligibility, gather demographic data, and collect contact information. We also screened IP addresses to verify U.S.
status. Making use of the screener data, we adopted amaximum variation sampling approach [30] in which we
selected potential participants with the aim of capturing
a diverse pool of experiences, enrolling women from a
range of ages, racial/ethnic groups, education levels, andLaestadius et al. BMC Medicine (2024) 22:243

insurance types. Institutional Review Board approval wasreceived from the University of Wisconsin—Milwaukee.
We selected a target sample size of 30 participants,
which is slightly larger than what prior studies suggest isneeded to reach saturation [31, 32]. We opted for a larger
sample size to account for the potential heterogeneityof experiences accessing and obtaining care from Long
COVID clinics, which impacts the “information power”
of the sample and necessitates a larger sample size [33].
Four participants came from the prior Long COVID survey, with the rest from social media and professional/
personal network outreach efforts by team members.
Participants who completed interviews received a $50
gift card. Participants were from 16 different U.S. states
and ranged in age from 19 to 67. See Table 1 for participant demographics.
Of the 30 women, 43.3% (n = 13) mentioned having been seen at a Long COVID clinic or by a provider described as being affiliated with a Long COVID
clinic (virtually or in person), 30.0% (n = 9) explored or
attempted to be seen at a Long COVID clinic but had notbeen seen at time of interview, and 26.7% (n = 8) had not
explored Long COVID clinics, were unaware of them, or
did not mention them. See Table 2 for additional details
by participant.
After providing verbal consent, participants completedsemi-structured interviews via Zoom video, which werethen auto-transcribed by Zoom and manually checked
for accuracy. Interviews lasted on average 65 min. As
part of a larger study about women and Long COVID,
interview questions considered experiences seeking medical care for Long COVID, the types of medical providers participants had seen, barriers to obtaining care, andparticipant suggestions for improving Long COVID care.
Long COVID clinic discussions developed organicallyas participants recounted their full care seeking journeys. Following each interview, we prepared brief reflexive memos capturing key insights and reflections on theinterview process.
We analyzed interview data using a framework analysis
approach [34]. The lead author and two trained students
independently open coded the first five transcripts using
MAXQDA 2022. We discussed initial coding and developed a codebook. The lead author applied this codebook
for coding the remaining transcripts, with the opportunity for new codes to be added via inductive coding.
We found that no new substantive dimensions of Long
COVID clinic access or quality of care were identified
as coding of the final transcripts occurred, indicatingthat data saturation was reached [31]. Following framework analysis steps, the lead author then charted Long
COVID clinic codes for each participant, with summaries
and illustrative quotes, into a MAXQDA matrix table toPage 3 of 13

Table 1 Summary participant characteristics
Characteristics

N = 30

%

Age
Teens

1

3.3%

20s

4

13.3%

30s

7

23.3%

40s

11

36.7%

50s

5

16.7%

60s

2

6.7%

Race/Ethnicity
White non-Hispanic

17

56.7%

Black

4

13.3%

Black/White

2

6.7%

Hispanic1

3.3%

Hispanic/White

1

3.3%

Asian/White

3

10.0%

Middle Eastern/White

2

6.7%

Level of Educational Attainment
High school or GED

4

13.3%

Four Year College Degree

15

50.0%

Graduate Degree

11

36.7%

U.S. Census Region
West

6

20.0%

South

5

16.7%

Midwest9

30.0%

Northeast

9

30.0%

Pacific

1

3.3%

Insurance TypePrivate (employer, exchange)

19

63.3%

Medicaid

7

23.3%

Medicare4

13.3%

Long COVID Clinic Status
Visited Long COVID Clinic

13

43.3%

Explored or Attempted Visiting Long COVID 9
Clinic30.0%

Did not Explore/Did not Mention

8

26.7%

facilitate interpretation. The full team reviewed themenames and descriptions before findings were finalized.

Results
Qualitative analysis generated five overarching themes
related to experiences with Long COVID clinics: (1)Access to clinics remains an issue, (2) Clinics are not aone stop shop, (3) Not all clinic providers have sufficientLong COVID knowledge, (4) Clinics can offer validation and care, and (5) Treatment options are critical andurgent. Participant quotes below are identified by participant number, age group, and U.S. Census region. We
removed names of specific medical centers and providers

Laestadius et al. BMC Medicine (2024) 22:243

Page 4 of 13

Table 2 List of participant demographics
Participant
NumberRace/Ethnicity

Age

RegionEducation

Insurance TypeCOVID Clinic Status

1

White/Black/American Indian

40 s

MidwestBachelors

Medicare

No/Not aware

2

White

30 s

MidwestHigh School

Medicaid

No/Not aware

3

Black

20 s

MidwestGraduate

Private

No/Not mentioned

4

White

40 s

Northeast

Bachelors

PrivateExplored or Attempted

5White/Asian

40 s

MidwestGraduate

Private

Yes

6

White

40 s

West

Graduate

Private

Yes

7

Black

60 s

West

Bachelors

Medicare

Explored or Attempted

8

White

40 s

South

Graduate

PrivateExplored or Attempted

9

White

20 s

Northeast

Bachelors

Private

Yes

10

Black

30 s

MidwestGraduate

Private

Yes

11

White

30 s

West

Graduate

Medicaid

Explored or Attempted

12

White

40 s

MidwestHigh School

Private

Yes

13

White

40 s

Northeast

Bachelors

Medicaid

Yes

14

White

30 s

West

Graduate

PrivateExplored or Attempted

15

White

60 s

South

Bachelors

Medicare

No/Not mentioned

16

White

20 s

MidwestBachelors

Private

No/Not mentioned

17

White

40 s

Pacific

Graduate

Medicaid

Yes

18

White

50 s

Northeast

Bachelors

Medicaid

No/Not mentioned

19

White/Middle Eastern

40 s

Northeast

Graduate

PrivateYes

20

White/Black

30 s

Northeast

Bachelors

Medicaid

Yes

21

Hispanic

Teens

South

High School

Medicaid

No/Not mentioned

22

White

50 s

West

Graduate

PrivateYes

23

White/Asian

40 s

Northeast

Bachelors

Private

No/Not mentioned

24

White/Middle Eastern

50 s

Northeast

Graduate

PrivateExplored or Attempted

25

White

50 s

Northeast

High School

Private

Yes

26

White

50 s

MidwestBachelors

Medicare

Explored or Attempted

27

White/Asian

40 s

South

Bachelors

Private

Yes

28

White

30 s

MidwestBachelors

PrivateExplored or Attempted

29

White/Hispanic

20 s

West

Bachelors

PrivateExplored or Attempted

30

Black

30 s

South

Bachelors

PrivateYes

to ensure confidentiality. See Fig. 1 for a summary of eachtheme.
Access to clinics remains an issue

Participants who had been seen, or attempted to be seen,
at a Long COVID clinic reported multiple barriers toaccess, including awareness, referrals, and clinic locationand organization. Many participants described how they
had started their care journey with primary care providers (PCPs) or emergency departments. Two participants,
both in the Midwest, indicated that their PCPs had nevermentioned Long COVID clinics to them, but that they
were now interested in attending one after learning about
them through probing by the interviewer. For example,
one of the two indicated that she was happy with her
PCP, but would prefer to see a specialty clinic due toadditional insight they could likely offer:

Participant: My doctor’s been pretty good as far
as working with me and keeping me up to date andstuff so. Even my fiancée, he’s like, I think he fractured like a rib from coughing so hard. Yeah, so it’s
like, yeah, we need... doctors specifically for that,you know? Like, you can go to like a COVID clinic,
you know, or something.
Interviewer: … I think that there’s been a little
bit in the news about Long COVID clinics. Is thatsomething that you’ve looked into at all, or thatyour doctors ever mentioned?
Participant: Uum, no, no. I was just thinking about it. Like, that would actually be a goodidea to have something like that for people like myLaestadius et al. BMC Medicine (2024) 22:243

Fig. 1 Long COVID clinic care themes and quotes

Page 5 of 13

Laestadius et al. BMC Medicine (2024) 22:243

fiancé, who don’t have a doctor who can help themout. But I would probably be interested in it, too,because, just because it’s, they’re more, that’s their
specialty. You know, I would, I would check that
out, too.” (P1, 40s, Midwest)
Another participant expressed a lack of knowledge
about the existence of clinics but explained that she had
eventually been directed to a Long COVID clinic affiliated provider after being trapped in a cycle of emergency
department admissions for her symptoms. She noted thatshe did not know how others would find out that such a
service was available.
“I’m not sure how me, as a patient, is supposed toknow that [hospital system] has a doctor who specializes in COVID and there’s a COVID Clinic... like
I’m just not sure how patients are supposed to figurethat out. And maybe I’m just not very savvy, but I
just didn’t see clear signs. Like, I think, kind of likehow you, you know, if I break my arm, I need to go
see an orthopedic type thing." (P30, 30s, South)
Thus, lack of awareness about clinics and providers who fail to suggest clinics as an option contribute todelays in accessing care and, in some cases, can prevent
patients from ever connecting with a Long COVID clinic.
For others, the obstacle was not knowledge about clinics, but rather that their PCP was actively discouraging
or blocking their attempt to be seen at a clinic. WhenLong COVID clinics or insurance required referrals,
this obstacle was heightened. One participant who had
still not been to a Long COVID clinic due to this barrier
explained how her PCP and the need for a referral had
prevented her from being seen at the clinic she hoped toattend:“Every single time I’ve asked [my PCP] about if
I should see like a Long COVID specialist, or if weshould take that into consideration, into her writing
the referral, and maybe they would want to manage things better than how she has been, she’s kindof written me off even. She told me at our last visit…
that the Long COVID clinics would want to see that
I had gone to a cardiologist before accepting me anyways. Which I’m not sure is true, but I, I looked up
the one at [X university hospital]… and I tried to
explain that it doesn’t look like that at all, because
they have the specialists there. But she still didn’t
want to fill out the paperwork, so I kind of got stuckwith that.” (P29, 20s, West)
Another barrier came in the form of clinics requiring a positive polymerase chain reaction (PCR) or antibody test for COVID-19 to be seen. This was a particular

Page 6 of 13

issue for those who had become ill during the first waveof COVID when testing was not widely available. Whilesome participants indicated they had initially been turned
away from a clinic but persisted until they found one that
did not require a positive test, others still had not seen aclinic due to this barrier. One woman explained, “My primary care provider suggested that I, like, be referred to aLong COVID Clinic. It is nearby. But I was turned away
because I don’t have a positive test for COVID” (P14,30s, West). The lack of a positive test had initially led
another participant to attend a clinic that was a 6-hourround-trip from her home (P22, 50s, West). She stated
she was relieved when she contracted COVID a second
time because she could finally obtain a positive test to get
access to a Long COVID clinic closer to her home.
Finally, logistics and organizational challenges posed
barriers to accessing clinics. As mentioned above, location was sometimes a challenge. Another participant
noted that she had explored the idea of a Long COVID
clinic, but that,“…the hospital group that many of my doctors arepart of does not have a Long COVID clinic or specialist group that could act as a clearing house forall this stuff, or I could go there and do it all at once.”(P8, 40s, South)
Others experienced long wait times to be seen at clinics, including one participant who had waited for months
for an appointment only to be told that the “clinic had
actually been shut down, because the one nurse who
was running it left” (P20, 30 s, Northeast). Another participant described feeling discouraged when a visit wasrescheduled without notice:“I was supposed to have an appointment in early
March with another place. So, I had booked in
December, and when I showed up, they were like,‘Oh, we changed your appointment to the end of
May and didn’t tell you.’ And I was like, ‘Okay, F
you.’ So, I just canceled that. I was like, ‘I’m not goingto go here.’” (P5, 40s, Midwest)
These quotes highlight the logistical struggles of successfully being seen at clinics. Participants also stressedthat navigating these struggles was further complicatedby the taxing nature of their Long COVID symptoms.
Clinics are often not a one stop shop

A common frustration was that the Long COVID clinic
did not operate a singular, coordinated clinic that was
prepared to meet the breadth of Long COVID healthneeds. Several participants expressed disappointment
about the clinic structures they experienced once they
were able to be seen.

Laestadius et al. BMC Medicine (2024) 22:243“I really, really, really wish that if you’re going to callyourself aLong COVID clinic, that you are not just aplace where you shuttle people to other doctors who
are not part of the Long COVID clinic. I don’t understand why they set up, ‘COVID clinics’that are basically places that do that. And that seems to me themajority of them.” (P19, 40s, Northeast)
For some, Long COVID clinics were a single telehealthnurse who provided guidance and referrals. While referrals themselves were not inherently a negative experienceand participants were generally pleased to see specialists, the lack of coordination between providers and thelack of a centralized location for care created additionalburdens, forcing women to schedule additional appointments, serve as a go-between for providers, and travel
between appointments. The lack of coordination was also
sometimes seen as limiting the quality of care received,with a sense that clinics did not see the full picture of
symptoms they were experiencing.
“The dream is that there’s like one place you go, andthey do all your imaging, all your blood tests andall your follow up, and they coordinate all the care
between all the specialists, and they just like, takecare of you. And also, like that, you can coordinate,
like having fewer, having to go fewer places, fewer
different times. Not having to go to one place for this,to another place for that.” (P13, 40s, Northeast)“That whole Long, Long Haul COVID Clinic, theysaid that they are supposed to help and interact.
They didn’t interact with each other. Like I had tobring all my research to people myself and it’s, andwhen you’re already tired and sick, it’s really hard
to do that. Like I really feel like with Long COVID,
there needs to be some type of advocates that areassigned to each people, especially people with likelower resources. I’ve been living off my savings. It’s
now gone since I got sick over two years ago. I’ve
already been denied disability.” (P17, 50s, Pacific)
The quotes above capture participant desire for an
integrated one-stop shop model where multiple tests
can be done in the same visit and where providers confer about results and treatments plans. The second quotealso indicates the need for navigators to assist patientsin handling the complexities of care across multiple providers and facilities, as well as frustration about the gap
between the ideal clinic model and actual lived experience of attending a clinic. Between the logistical barriers
to being seen at clinics, and the logistical challenges ofnavigating care once at a clinic, participants described aclinic system that often relies on patients serving as theirPage 7 of 13

own advocates and care managers despite grappling withsymptoms such as fatigue and brain fog.
Not all clinic providers have sufficient long COVID
knowledge

Because of the referral-oriented nature of the clinics, theexperiences that participants had with Long COVID clinics depended heavily on the quality of the specialists towhom they were referred. Even within clinics, different
specialists had offered varying levels of awareness about
Long COVID. Participants recognized that current medical knowledge about Long COVID was limited, but feltthat some of the providers they had seen via referrals
lacked the baseline level of knowledge that they expected
for clinic affiliation.
“I went here thinking that you send me to people
who basically see Long COVID patients! That’s
what the name implies, and I didn’t expect you all
to be experts in it, and nobody is. But at least if
you’re seeing Long COVID patients day in, day out,
you have more experience than the average person. It, it was very frustrating because I waited likesix months to get in there and then it was like ‘oh,here go see another doctor that’s not even a part ofus.’It’s like what? So that was a bummer as an experience and the lady didn’t know anything about
Long COVID and was one of the people that wasvery like ‘maybe you’re just not taking deep enoughbreaths.’ It’s like, what? Thank you. That’s super helpful [sarcasm].” (P19, 50s, Northeast)
One participant noted that one of her Long COVID
clinic providers had admitted limited knowledge about
Long COVID and that the clinic primarily had represented the financial interests of the hospital system:“My [specialist], sweet as she is, looked me in the eyeand said, ‘I don’t know what I’m doing. They haven’t educated me about Long COVID at all. There’s an administrator that thinks we can make money off of this, andthat’s why I’m seeing all these people.’ She’s like,‘I hate it.
I don’t have any help.’”(P6, 40s, West). While the provider
had still been able to be supportive by offering additional
testing, the participant stressed the need for better provider education. Further, the concern about health systems profiting off Long COVID patients by adding clinics
without sufficient expertise to support them is notablegiven that concerns about financial exploitation have, todate, primarily focused on alternative providers offering
unfounded treatments [35].
There was a strong desire that Long COVID clinic providers be more informed about current developments inLong COVID: “…one centralized place where everyone
knows some, where everyone knows what’s going on, like

Laestadius et al. BMC Medicine (2024) 22:243

the latest, would be more helpful” (P5, 40s, Midwest). A
participant who had attended both conventional Long
COVID clinics and a private telehealth Long COVID
clinic described significant differences between the two,with the conventional clinic far behind in terms of bothawareness of current developments and collaboration:“There [at the telehealth Long COVID clinic], when I
read an article and send it to them, they’ve alreadyread it, even if it’s something that just came out…
and they’re willing to try things, whereas with you
know [the hospital Long COVID clinic] they farmyou out to just individuals in different disciplinesthat aren’t really necessarily up on Long COVID...
They didn’t function as an integral whole. It was, it
was kind of a carve up the elephant, you know, andthe Long COVID doctors theoretically should have
had knowledge and interest in root causes, and thenmeeting together with the other doctors, and, youknow, like sharing information. Or I feel like these
doctors should all get together once a week, once amonth, whatever, and, and go through,what’s the latest? What are the latest articles that have hit?” (P22,50s, West)
Clinics can offer validation and care

Despite the concerns raised above, several of the participants who had attended Long COVID clinics wererelieved to finally have had their experiences with Long
COVID validated and had found at least one clinic affiliated provider that had run diagnostic tests or offeredsuggestions for symptom relief. While validation alone is
not sufficient to relieve symptoms, legitimation of symptoms and status as a Long COVID patient was described
as a pivotal and cathartic experience. As indicated in thequotes below, this appreciation was in part grounded infeelings of having been dismissed or gaslit by primaryor emergency care providers, and a sense of relief at not
being treated like they were “crazy”:“If I didn’t have the Covid clinic, I don’t know
where I’d be…I can remember that email exchange
when I described myself to him, and I’m just sitting
there waiting, and he got back to me. ’Yes, absolutely.
You come here’, and I just burst into tears…you recognize this is a pattern, and I’m part of it. Oh, thankyou. Oh, my God, you know too! And what a miserable thing to be happy about!” (P25, 50s, Northeast)“The nurse practitioner will nod her head and say,‘Yes, that’s a Long COVID symptom…there’s nothing that’s outlandish to us. There’s nothing that wehaven’t heard. You’re welcome to tell, you know. Tell
us everything. There’s nothing that surprises us....’ soPage 8 of 13

that feels good. I’m not being made to be crazy. I’m
not being told it’s anxiety....” (P10, 30s, Midwest)
While less common than the aforementioned emotional support, some participants noted that their clinic
providers had also offered them access to off-label prescriptions that gave symptom relief they have been unable to obtain elsewhere. As expressed in the quote below,
clinic willingness to try different solutions also provided
a sense of hope:“Definitely the, the Long COVID clinic has helped...
like she actually, um... she put me on some coursesof Paxlovid, you know, and she was kind of like, ‘Listen, there’s no like studies blah blah blah, or like big
randomized trials like that. But, like we can like try
like some low-risk things where there’s like anecdotal
evidence of like help….’ So, she put me on a round of
Paxlovid, and it did make me feel better, like a lot
better… She also kind of like gave me hope, right?”(P5, 40s, Midwest)
Treatment options are critical and urgent

As suggested in the prior theme, participants particularly
valued Long COVID clinic providers who were willingto try novel approaches to treat their symptoms. Whilealternative and complementary treatments, such as
mindfulness, heart rate monitors, and acupuncture, werewelcomed by some participants, a focus purely on theseapproaches at times left participants feeling frustrated.
“They think the mindfulness is helpful. It can’t hurt
to try … It just seems like how many hundreds ofdollars was that for you to tell me that. It seems kindof pitifully obvious.” (P25, 50s, Northeast)“…and literally her recommending like games that
I could play on my phone or TV shows for me towatch, to occupy myself. So not really, you know,
providing what I would consider medical care.” (P20,
30s, Northeast)
Several participants mentioned that they had experienced benefits from the off-label use of pharmaceuticaldrugs and that they would welcome low-risk exploratory
treatments to see whether they would provide symptom relief. One participant stressed the emotional andphysical costs of doing nothing until U.S. Food and Drug
Administration (FDA)-approved drugs were available.
“…and there’s the whole RECOVER Study. It’s like, I
get it. You want to cross every t and dot every i.
But we’re out here now, and we’re waiting, and we
can’t just be left on our own, for, they say this will befour years of observation, of four years. I’ll be dead

Laestadius et al. BMC Medicine (2024) 22:243

in four years, like really. Just try something. Thinkoutside of the box. Try something.” (P25, 50s, Northeast)
The participant who had signed up for a private telehealth Long COVID clinic expressed similar concernswith waiting until federal approvals for Long COVID
treatments has been secured.
“So the doctor at [hospital Long COVID clinic] iskind of poo-pooing the treatments like oh, we only
like to do like FDA approved stuff, but it’s like, FDA
approved stuff? You know, I’m not doing anything
extremely risky. I mean, there’s you know, probably
1 billion people on the planet who are using nicotine
every day. Not that it’s good for them, but come on,
for me to use a [nicotine] patch, you know, half ofthe lowest dose patch for 2 weeks? It’s pretty low risk,
you know? If I can get some functionality out of that,
great. Guanfacine, an ADHD medication. If I can
get some improvement out of it. These are the typesof things you know, I’m willing to try, and my doctors at [telehealth clinic] are willing to try… So I justfeel like the medical community doesn’t understand.
They’re playing it safe, but they’re not playing it safefor their patients. They’re playing it safe for theirown potential risk.” (P22, 50s, West)She also noted that the conventional university-affiliated clinics she had visited felt like “palliative care” andthat one of her providers there had told her that “youwon’t get well here… they’re not really looking at cuttingedge treatments” and had provided names that ultimately
led her to the telehealth clinic. While the fees associatedwith the telehealth clinic had posed a significant burden, she felt obligated to continue since the other clinics had largely been unwilling to try new approaches andwere dismissive of off-label approaches such as nicotine
patches.

Discussion
Overall, this study’s findings present a picture in which
the potential for Long COVID clinics to fill a vital needhas been hampered by challenges related to care coordination and quality of care. These findings are consistent
with the limited prior work on experiences with Long
COVID clinics, particularly regarding the difficulty of
being seen at a clinic, frustrations with referrals, anda desire for concrete steps to improve symptoms [13,23, 24]. The current findings show these key challenges
remain 3 years after Long COVID clinics first emerged in2020 [25]. Barriers created by the lack of a COVID test
were particularly concerning given that access to tests
was limited during the early phase of the pandemic andPage 9 of 13

that U.S. insurers are no longer required to cover the costof COVID tests as of May 2023 [36]. Further, not all participants were aware of Long COVID clinics, indicating
a continued need for raising public and PCP awarenessof Long COVID treatment options. Health department
efforts to raise awareness of support and treatment
options for those with Long COVID have been relatively limited [37]. Survey research is needed to explore
how patients attending Long COVID clinics first learned
about their existence and how to become enrolled as apatient.
Validation and treatment as key functions

We also found that Long COVD clinic experiences werevariable and that some women with Long COVID receive
more comprehensive, coordinated, and informed carethan others. While the current study’s approach does notallow us to generalize concretely based upon effects of
insurance type, demographics, or region on these experiences, the variability here suggests that while Long
COVID clinics can provide a satisfactory and positive
experience even with few formally recognized treatment protocols available, not all clinics are performing
optimally. Participants particularly valued clinic providers who heard their concerns, who were informed about
the most recent developments with Long COVID diagnostics and treatments, and who were willing to try low
risk off-label or alternative treatments while the wait
for FDA-approved treatments continues. Many clinics
appear to be open to learning about new clinical protocols and joining Long COVID clinic collaboratives [25],which may be a promising approach for ensuring that
all clinics benefit from the lessons learned by those whohave resources to stay abreast of potential new treatment
protocols. Since Long COVID patients have been sharing and crowdsourcing information about their condition
on social media [38], online communities may also be asource of valuable information for providers seeking to
improve clinic experiences and for patients seeking clinics that align with their needs.
While Long COVID clinics can offer a valuable service
even just in validating women’s Long COVID symptoms
after they have been “gaslit” by other providers [12, 23],
the quality of life and health challenges posed by Long
COVID necessitates combining recognition with efforts
to relieve symptoms [8, 9, 11]. Providers are faced withnavigating the delicate balance between the good that
may come from prescribing off-label medications (particularly those that already have been approved for treatment of other illnesses and/or populations) and theprinciple of “First, do no harm”, especially in the midst
and aftermath of a pandemic that seemed to provide
more questions than answers [39, 40]. Communication

Laestadius et al. BMC Medicine (2024) 22:243

between providers and patients and clear guidance forproviders are both of utmost importance. A failure tooffer any meaningful guidance for symptom relief canencourage self-treatment, which can also pose healthrisks and drain financial resources [22, 35].
Challenges posed by resources, clinical guidance,and coordination of care

On an operational level, health systems seeking to establish Long COVID clinics should reflect on whether they
are allocating sufficient resources to ensure that clinics
can operate properly, including staffing levels, coordination, and expertise among clinic affiliated providers andspecialist referrals. Prior research suggests that clinics
need additional resources, including physicians and staff,
and that not all clinics are following best practices, specifically for holding interdisciplinary team meetings [25].
The findings here suggest that patients notice when careis uninformed or uncoordinated, and several participantsin this study described negative experiences with clinics, contributing to frustration, exhaustion, and at times
despair. Poorly implemented and under-resourced Long
COVID clinics may contribute to the trauma alreadyexperienced by Long COVID patients from their symptoms, social stigma, and medical gaslighting [10]. SinceLong COVID clinics are uniquely positioned and framed
as being the place to go to handle complex Long COVID
symptoms, it is critical to patient wellbeing that they
provide some minimum level of care that complies withemerging best practices. Further, for women, who havelong been shown to experience increased physical andsomatoform symptoms across a host of health conditions [41], lack of validation and attention by health care
professionals of Long COVID symptoms may have detrimental effects on future engagement with Long COVID
clinics and overall quality of life.
More broadly, our findings highlight two issues thatpersist in the U.S. health care system and are only compounded by the COVID-19 pandemic. The first issue
pertains to fragmented care. In recent years, several innovative delivery models have been initiated to improve
care coordination such as Patient-Centered Medical
Homes, Accountable Care Organizations (ACOs), andMedicaid Health Homes [42]. However, these models
have only been adopted at a limited scale. Moreover, evenmodels such as ACOs have struggled with integrating
specialists and coordinating comprehensive patient careplans for complex patients [43, 44]. Our findings highlight the importance of developing and implementing
effective strategies for care coordination to provide more
effective care to Long COVID patients. Across studies,Long COVID patients consistently voice the need for a
multi-disciplinary and integrated approach to their care

Page 10 of 13[21, 22, 24, 45]. One-stop multidisciplinary clinics are
critical to “avoid multiple referrals to different specialists,” which would otherwise be needed given the breadthof symptoms experienced by patients, often impacting
multiple different organ systems [8, 26]. Improving coordinated care for Long COVID patients may require tying
incentives to outcome- and process-based performance.
To develop these performance benchmarks, clinicalguidelines will be needed. Sound guidelines will necessitate both a large body of clinical research and patient
input, specifically from those who hold lived experience
with Long COVID [46, 47]. For example, work by groups
such as the Patient Led Research Collaborative can offer
valuable insight into Long COVID management [48].
The second issue revealed by our study is related to the
US public health preparedness. Public health services
have historically been underfunded [49, 50]. When hit by
the COVID pandemic, the U.S. public health system was
ill-equipped to respond efficiently and effectively [50].
One prominent aspect of this failure, as evident in ourfindings, is lacking sufficient and timely clinical guidancefor health care providers. Continued patient experienceswith providers who are not fully informed about Long
COVID suggest a strong need for additional clinician
training related to Long COVID [45].
While challenges with care coordination are common
for chronic disease management even in high-income
and well-resourced geographic regions [51], the findingsin the current study may be even more accentuated in
low-income communities within the USA or in medicallyunderserved global regions. Further, if the concerns articulated by this study’s participants are present in relation
to Long COVID specialty clinics in the USA, the gaps
in care are likely even starker for women in U.S. communities or low-income and middle-income countries
with no or less-specialized Long COVID clinics [52].
Finally, while our study focused on women’s experiences
due both to their higher risk of developing Long COVID
and to gendered barriers to care [2, 28], challenges withlimited clinic capacity, coordination of care, and Long
COVID expertise among providers likely impact Long
COVID patients of all genders. Future research should
consider men’s experiences seeking Long COVID care,particularly in light of evidence that symptoms may varyby sex [53, 54].
Limitations and future directions

Despite the important implications of the current study
findings, there are several limitations that should be considered. Participants’ self-reported Long COVID status, and symptoms were not independently confirmed.
Although many Long COVID symptoms can only beevidenced through self-report, future-related researchLaestadius et al. BMC Medicine (2024) 22:243

might consider recruiting participants directly fromLong COVID clinics rather than the diverse samplingtechniques used in the current study. Additionally, overhalf of participants identified as White, recruiting andinterviews were conducted in English, and education levels were somewhat higher than the U.S. average. Thus,
the already notable barriers to obtaining care that wereidentified may be understated. In the USA, lower-income
adults and Black and Hispanic women report higher
rates of Long COVID [6, 55]. These women may faceheightened barriers to accessing care due to structuraland interpersonal racism [14]. Further, everyone in our
sample reported having some form of health insurance.
Women without health insurance may face additional
barriers to receiving referrals or being seen at clinics.
These caveats are important for assessing the transferability of findings to other Long COVID populations.
Additionally, while all participants were asked about
the care they had sought for Long COVID, not all participants were probed to ensure that a failure to mention Long COVID clinics represented a lack of interest in
attending such a clinic. Accordingly, the strong barriers
to clinic attendance that we found here may be understated. Finally, Zoom was used for transcription, whichheightens the risk of transcription errors. To counteract this, we manually checked transcripts and all quotes
were confirmed against the audio for accuracy. Future
work should also consider asking participants how theylearned about the study to help determine the most effective strategies for recruitment.

Conclusions
This was the first known study to qualitatively examine
the experiences of U.S. women seeking high-quality carefrom Long COVID clinics. Participants’ experiences converged on the five themes of access to clinics remaining
an issue, clinics not being a one stop shop, not all clinic
providers having sufficient Long COVID knowledge,
the ability of clinics to offer validation and care, andthe urgency and critical nature of developing and offering treatment options for Long COVID. These themes
provide concrete and actionable suggestions for Long
COVID clinics to improve experiences for women experiencing Long COVID symptoms and seeking resources
for symptom relief. Incorporating these suggestions will
have high potential to improve care experiences for Long
COVID and potentially increase overall patient qualityof life. Further, Long COVID clinics need additional support in the face of challenges including limited resources
and uncertainty about the pandemic and its after-effects,
as well as the sheer volume of Long COVID patients as
COVID-19 continues to spread. More resources for bothPage 11 of 13

research and practice are critically needed to adequately
meet the needs of those with Long COVID.
Abbreviations
ACO	Accountable Care Organization
FDA	U.S. Food and Drug Administration
PASC	Post-acute sequelae of COVID-19
PCP	Primary care provider
Acknowledgements
We wish to thank Andrea Bishop and Ana Nikolic for assistance with codebook
development and checking transcription accuracy, Kelsey Van Hoorn for assis‑
tance checking transcription accuracy, and O. F. Grace Ogwu for assistancegathering literature.
Authors’ contributions
LIL and JPDG developed the study idea. LIL, JPDG, PBP, KEC, and CCC
co-developed the interview guide. LIL and MMW screened participants, con‑ducted interviews, and analyzed data. LIL, JPDG, MMW, PBP, KEC, XD, RG, and
CCC contributed to recruitment, finalizing qualitative themes, and manuscript
development. All authors read and approved the final manuscript.
Authors’ Twitter handles@LinneaLaestad (Linnea Laestadius);@RedheadAcademic (Jeanine Guidry).
Funding
This work received financial support from the University of Wisconsin –Milwaukee Research Assistance Fund (RAF) and the University of Wisconsin –Milwaukee Support for Undergraduate Research Fellows (SURF) Program.
Availability of data and materials
Transcripts generated and analyzed during the current study are not publicly
available to ensure participant confidentiality, but coded segments and code‑books are available from the corresponding author on reasonable request.

Declarations
Ethics approval and consent to participate
This study (IRB# 23.100) was reviewed by the University of Wisconsin-Milwau‑
kee Institutional Review Board and granted Exempt Status under Category 2
as governed by 45 CFR 46.104(d). All participants provided informed consent
for participation in this study.
Consent for publication
All participants provided informed consent for participation in this study.
Competing interests
The authors declare that they have no competing interests.
Author details
1
Zilber College of Public Health, University of Wisconsin-Milwaukee, Mil‑waukee, WI, USA. 2 Department of Communication and Cognition, Tilburg
University, Tilburg, The Netherlands. 3 School of Data Science and Depart‑
ment of Psychology, University of Virginia, Charlottesville, VA, USA. 4 Schoolof Population Health, Virginia Commonwealth University, Richmond, VA, USA.
5
Department of Physical Medicine and Rehabilitation, Virginia Commonwealth
University School of Medicine, Richmond, VA, USA. 6 Department of Mediaand Information, Michigan State University, East Lansing, MI, USA.
Received: 24 February 2024 Accepted: 5 June 2024
Published: 13 June 2024

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