Following the framework by Levesque et al. (50), findings are presented along the ten steps of the ‘access to health care’ model, supported by expert (E) and patient (P) quotes. A condensed summary of the key results is presented in Fig. 4. Further selected quotes are listed in supplementary material A6-7.
[FIGURE 4]
Approachability
After symptom onset, patients reported a lack of available and easily accessible information on relevant services as well as medical information on symptoms and the condition, particularly by health authorities. In some cases, available online information was perceived as misleading or eventually turned out to be incorrect and GPs themselves did not know where to refer patients. As a result, patients required substantial effort to initially find appropriate services.
“I found the main difficulty was to know what offers there are, what can I do, what is available at all? This information is not really easily accessible. You have to do an insane amount of research and […] I find it very, very difficult that there isn't a list of contacts you can trust. There is also a lot of nonsense circulating and you have to be able to differentiate.” (P5)
“It is basically impossible [for patients] to find out quickly and easily where to go for long COVID.” (E9)
Clinical experts working as GPs confirmed the patient perspective and added that they also felt left in the dark regarding the exact requirements and procedures conducted at specialist LC outpatient hospital departments.
In response to scarce official information, the patient-founded and -led support group Long Covid Austria curated a list of specialized services and made it available to members, which patients deemed extremely helpful. Moreover, patients informally exchanged referrals and selected media coverage by traditional outlets incorporating scientific evidence was seen as helpful to learn more about the condition itself and available services such as rehabilitation.
Ability to perceive
Barriers in the ability to perceive healthcare needs were experienced twofold. Patients described having difficulties attributing unspecific symptoms to the condition and resorted to self-track vital signs such as heart rate or blood pressure. Experts observed a split pattern in this regard: On the one hand, patients showed a low awareness of LC as a condition. On the other hand, patients displayed an increased sensibility towards symptoms and tended to self-diagnose. Subsequently, it was difficult for patients to accept their diagnosed or suspected condition and the limitations and consequences that came with it. In this context, patients also found it challenging to actively communicate those limitations in either professional or private settings.
“When I got home, I really didn't want to know anything about doctors and Long COVID anymore and thought to myself, no. I couldn't actually quite believe that I might have POTS [postural orthostatic tachycardia syndrome] although I recognised the signs, and I thought to myself, okay, that's probably what it is, but I still thought, no, I still don't feel like that.” (P17)
Acceptability
Patients had to deal with scepticism by medical professionals as well as in their personal and professional environments. Encounters with medical professionals turned out to be a major challenge to patients and many had to switch doctors multiple times before they felt like their condition was finally accepted as such. Experiences ranged from symptoms not being taken seriously and downplayed over unsubstantiated psychosomatic diagnoses all the way to denial of the existence of LC. This gave patients the impression that they constantly had to justify themselves.
“Then I went to the GP. He said, well, if I got to the 2nd floor by foot, then it can't be that bad. Then I thought to myself, no, sorry, I went ski touring for 1,000 meters in January and I felt better than I do now on the 2nd floor, just as a comparison. Unfortunately, he didn't take me seriously at the beginning.” (P13)
Moreover, patients and experts alike were frustrated as medical professionals such as specialists or medical assessors at courts or insurance funds ignored the expertise of their peers. Vaccinations as a potential trigger of LC symptoms also were initially rejected by medical personnel. However, patients also reported positive experiences with individual medical professionals who took them seriously and friends and family often showed sympathy as well, being considered the biggest support by patients. However, expectations regarding magnitude and duration of the associated limitations sometimes nonetheless were in contrast to patients’ actual abilities and energy levels, causing frustration up to domestic violence.
“Especially in my immediate environment, my family, etc. Understanding, yes, but. Yes, we understand everything, but can you still go shopping for this and that, can you still do this and that? So, between understanding and then also, every bit of protection, every pacing I give myself is hard-won, because the demands from outside are still there. You function as a mother and a wife.” (P5)
In the professional context, patients described very stigmatizing but also supportive reactions, depending on the individual employer, superior, and colleagues. Negative experiences personally and professionally were connected to general scepticism towards and a lack of knowledge about the condition, particularly in non-medical environments. By contrast, one affected nurse described not being taken seriously by her colleagues for being unvaccinated.
Both patients and experts acknowledged that ongoing LC media coverage and increasing evidence of the condition is improving overall acceptance. However, experts cautioned that the public and political sentiment could be affected by an increasing fatigue towards the pandemic and any COVID-19-related topics.
Ability to seek
Barriers hindering patients’ ability to seek care regarding a perceived healthcare need were limited health literacy and experienced stigma. Health literacy in this case was concerned with knowledge about the condition and consequently which specialists to consult as patients described not being able to pinpoint symptoms and experts added that often the connection of symptoms to certain medical disciplines was not apparent to patients, for example immunology. Unfamiliar symptoms and limitations in combination with the abovementioned external stigma led patients to question themselves and their perception of symptoms, effectively inducing internalized stigma.
“At some point you don’t understand your own body anymore because it suddenly works completely differently to how you're used to and then I really thought to myself, what if he [the doctor] is right? And then I simply questioned every symptom that I had and asked myself the question all the time, am I imagining it or do I really have it?” (P17)
Availability and accommodation
Participants highlighted multiple barriers to reach services due to lacking availability and accommodation. Considering the breadth and heterogeneity of LC symptoms, patients usually had to see multiple different specialists to rule out alternative diagnoses and treat specific symptoms. In response, authorities across Austria introduced specific LC outpatient (hospital) departments as early as 2021. The federal state of Tyrol moreover set up a central coordination unit for LC patients to determine the most dominant symptoms and guide them to the related outpatient departments. However, this approach was not adopted by other Austrian federal states.
When making appointments at ambulatory specialists, patients had to provide referrals and in case of said specialized LC outpatient hospital departments, additionally had to have specific symptoms to be admitted. Furthermore, statutory health insurance funds requested regular proof of illness and medical reports by specialists in order to continue sick pay.
“If you don't hand in a specialist's report pretty much immediately, they [statutory health insurance] come knocking and then turn off the money tap.” (P16)
Some services and benefits such as rehabilitation, recognition as work-related condition, or disability pension required formal applications including medical reports. Patients experienced those formalities as time-consuming and stressful despite some statutory health insurance funds offering assistance with the submission of applications. Patients particularly feared the application for a disability pension as they were aware of a very low success rate due to the experiences of others shared on social media.
Specialists in the ambulatory care setting with LC-specific expertise and specialized LC outpatient hospital departments were scarce and consequently confronted with high demand for their services, leading to capacity constraints and many either not accepting any new patients at all or at waiting times for appointments of multiple months up to a year. By contrast, primary care including GPs was highlighted for short waiting times for appointments or even drop-in sessions.
“I actually don't have any capacity. In this respect, you can't really talk about waiting times because it's not guaranteed that you'll get an appointment at all. I have a notice on my homepage for a few months now saying that there is an admission freeze. So fewer people wrote or called, but at the end of the day, a lot of people still call or email me. I probably get five to ten enquiries a day. Or even more.” (E9)
However, many specialized outpatient hospital departments across Austria were shut down in 2023, allegedly due to a lack of demand. This was criticised by patients and experts alike, emphasizing the continuous demand and the benefits of those departments as interdisciplinary offers. Waiting times on the day of the appointment could be up to multiple hours, particularly in the specialized outpatient hospital departments. Those were notably challenging to patients in case facilities were not catering to their limitations and waiting areas were noisy, bright, or did not offer any possibility to lie down. To counteract these challenges, some patients proactively communicated their requirements before appointments so providers could accommodate. Appointments themselves were often kept short which patients felt did not reflect their needs in light of their condition. This problem was especially prevalent in the public sector whereas non-contracted doctors were pointed out to offer longer appointments.
Ability to reach
The patients’ ability to reach services was hindered by multiple barriers. A lack of system knowledge and guidance by GPs was particularly challenging for those patients who previously had not yet been regular users of the healthcare system and were not familiar with the different mechanisms regarding referrals, applications, claims, and insurance coverage limitations. They often felt abandoned by GPs not offering any tangible guidance and described difficulties understanding suggested referrals as well as figuring out how to find knowledgeable ambulatory specialists.
“I'm not familiar with medical specialists either. It was the first time for me. Getting a referral, going to a specialist. […] Also rehab, what do I need from who, where do I go, I think you were pretty much left on your own.” (P6)
Patients had to take matters in their own hands, navigating the system and self-organizing their patient journey with little to no perceived support by authorities or the primary care sector. This included proactively finding the required services and, due to the abovementioned capacity constraints, persistently scheduling appointments often requiring repeated outreach.
“I wrote a specialist an email every fortnight for six months, always the same thing, copy/paste, hoping that he would read it at some point. And thank goodness he did.” (P8)
This organizational effort was experienced as very exhausting, stressful and time-consuming. Moreover, physically getting to services often was a barrier as patients’ mobility including the ability to drive often was impaired by their symptoms. By contrast, the main facilitator to reach services explicitly highlighted by patients was support by their social environment, mostly partners and families who assisted with the organization effort, daily chores and transportation. Moreover, some doctors offered telemedicine or home visits if necessary.
Affordability
Particularly in the early stages of the pandemic, LC was considered a minor concern compared to the acute disease according to interviewed experts. Consequently, resource allocation saw a prioritization of the latter, leading to insufficient structures being developed to tackle the arising challenge of persistent symptoms. As described before, patients felt like they lacked guidance and therefore deviated from the aspired patient pathway, for example by directly consulting with ambulatory specialists without a prior referral. Experts pointed this out as rather cost-ineffective.
Experts also emphasized that while there has been some improvement regarding statutory health insurance coverage of services specifically required by LC patients, overall coverage was still limited and examinations essential to diagnose LC such as the Schellong test were not included. Especially the time-intensity of LC patients was criticised as not being properly reflected in the remuneration of newly introduced services, such as a one-time in-depth consultation for suspected LC, resulting in high opportunity costs for doctors. Moreover, the offered remuneration was deemed insufficient to incentivise doctors to build up knowledge and treat patients.
“The outpatient sector tends not to have any additional available resources for multiprofessionalism and multidisciplinarity. I would say this is certainly an aspect that represents a barrier, an organisational one and in connection with this also the reimbursement, if you like. […] After all, if a detailed and very time-consuming clarification of complex clinical presentations in the outpatient sector is remunerated in the same way as everything else, not much will happen.” (E12)
Accordingly, more resources were demanded to strengthen treatment structures to accommodate for the condition’s heterogeneity and multitude of symptoms as well as dedicated research funding. One noteworthy positive example of sufficient resources was multidisciplinary rehabilitation nationwide, for which capacity constraints were negated by experts and patients, and co-payments were minimal due to coverage by statutory health insurance and even waived in case of low income.
Ability to pay
Patients mostly had to resort to the private, non-contracted healthcare sector when looking for ambulatory specialists with LC experience and also struggled with limited statutory health insurance coverage of recommended treatments.
“All the things that help me are hardly or not at all covered by [statutory] health insurance and my savings have melted away very, very, very much in the last year and a half.” (P13)
Due to the condition’s chronic nature, patients had to consult those specialists repeatedly, which was further fuelled by the statutory health insurance funds’ requirements of regular medical assessment reports in order to uphold eligibility of sickness pay. Consequently, some patients had to consult specialists even more often than medically necessary.
As a result, patients reported incurring substantial medical bills in stark contrast to the core principles underlying Austria’s universal healthcare system. Moreover, patients voiced frustrations that they felt left alone by statutory health insurance despite having paid substantial insurance contributions before. Some financial relief was offered by existing mechanisms in the health and social system such as tax deductibility of medical expenses and a capped annual prescription fee, however, the main financial burden was put on patients often accumulating several thousand Euros in expenses over time. Partly, the patients’ financial situation additionally came under pressure due to reduced income. While some patients were on extended sick leaves and only received sick pay lower than the regular salary, others had to reduce their working hours due to their symptoms. As a consequence, some patients prioritized their treatments according to their budgets, extending intervals between appointments for, e.g., physical therapy, or even purchasing medical equipment themselves in an effort to save money. Again, family and employer support were pointed out by patients to be vital in easing the financial pressure, at least to some extent.
“At some point, I talked to my family, my mum and my sisters. If it goes on like this, they said, do what helps you, we'll work together, that's fine. But that's not really how it’s supposed to be and what always frustrated me so much was that I write my statutory health insurance contribution on my invoices every month, I know how much I pay in and then sometimes I get 13.74 euros of it back every month, which is a major blow every time, where you think to yourself, I would really need this [money] right now.” (P13)
Appropriateness
Patients and experts alike described several encountered barriers concerning the appropriateness of health and social care. The main driver was the novelty of the condition, leaving providers, policy makers, and patients struggling to find appropriate solutions while simultaneously facing an ongoing pandemic. Particularly in the early stages of the pandemic, patients had difficulties to get a diagnosis by a medical professional, with some of the reasons related to the findings presented with regards to Acceptability. Some clinical experts emphasized the complexity of diagnosing LC in the absence of a clear biomarker, leading to late, alternative, or no diagnosis at all, complicating the patients’ journeys.
“It always gets complicated where it's difficult to see, when you can’t take a picture and the disorder comes to light, but when there are much more complex needs for examination, but in reality, you might not be able to make a technical medical diagnosis. Or almost none. In case of brain fog, you take an MRI, but you don't see any fog in the brain.” (E13)
However, other experts disagreed, stating clear indications and rather pointed in the direction of premature diagnoses without proper assessment as many patients seeking help had a prior COVID-19 infection and unspecified symptoms. Subsequently, initiating appropriate treatment proved equally difficult and frustrating to both providers and patients, as little scientific evidence was available and most importantly no cure yet, limiting treatment to tackling symptoms rather than the condition itself. Clinical experts in this context described feeling helpless in their inability to help patients. While some treatments simply did not yield the desired results, others turned out to be even counterproductive according to the experts. One commonly mentioned example was rehabilitation not adjusted for LC patients, setting them back on their road to recovery due to uncompromising mandatory schedules including physical exercises, no opportunity to take breaks, and facilities not fit for purpose.
By contrast, some patients described very positive rehabilitation experiences as providers adapted and tailored their offerings to the needs of LC patients. Patients benefitted from continuous multidisciplinary care unavailable in any other setting and being able to solely focus on their condition and how to handle the connected impairments. Multi- and interdisciplinary care as offered in rehabilitation was emphasized as desirable but currently lacking by experts and patients. They described the current system as rather isolated treatment of different symptoms by different disciplines, resulting in inefficiencies and an administrative burden to patients. Even on paper interdisciplinary LC outpatient hospital departments were always led by and located within a single discipline such as neurology or pulmonology.
“There should be truly interdisciplinary outpatient hospital departments, because it's now often the case that they are sent to the neurology long COVID clinic, neurology does a routine neurological assessment, finds nothing and says okay, we're not responsible because we can't find anything. And that's the end of the matter.” (E9)
Moreover, experts highlighted the lack of institutionalized exchange between disciplines, leaving the networking and interdisciplinary exchange to individual voluntary commitment. Particularly in the onset of the pandemic, this commitment by experts in their respective fields to jointly develop guidelines and drive national and international exchange to improve treatment as well as outreach to patient support groups was praised. This early cooperation resulted in the Austrian guideline on the diagnosis and treatment of LC as well as the recommended patient pathway (23). While the speed and cooperation to develop this multidisciplinary guideline and a corresponding web tool was deemed very positive, clinical experts voiced concerns about the practicality. They criticised the guideline as too long although they acknowledged the challenge of being concise regarding such a complex condition.
In the Austrian guideline, the recommended patient pathway put GPs at the centre, asking them to coordinate patient journeys with targeted referrals to specialists depending on symptoms. However, patients often deviated, directly seeking appointments at ambulatory specialists as not all GPs were able to provide sufficient guidance. This resulted – according to experts – in uncoordinated doctor hopping between specialists from different disciplines.
While patients and experts observed a positive trend in LC expertise, they emphasized a prevailing lack of knowledge on the topic by GPs and specialists as well as hesitance or a lack of capacity by doctors to keep up to date with the latest findings and recommendations. Patients already considered it a positive experience if their GPs followed specialist recommendations and provided referrals and prescriptions.
“So the feeling I always have is that every doctor thinks they are omniscient, but particularly on this topic [LC] there are only a handful of doctors who actually have expertise.” (P1)
This is in line with the experts’ calls for an inclusion of post viral conditions in the curriculum of medical degrees and training offers to medical personnel to build up expertise and exchange best practices. Moreover, a current lack of dedicated research into fit-for-purpose diagnostics and treatments has been highlighted by experts, who also pointed out a lack of available Austrian data on LC. The ongoing development and incorporation of LC-specific codes to the Austrian health data ecosystem was considered a long overdue necessity. Unavailable data also complicates arguing any policy changes in the social system. Patients and experts emphasized that the current system was not designed to provide for LC patients, to give them the time they need to appropriately recover, and to gradually re-enter the workforce. While returning to work initially part time was subsidized and well received by patients, employers had to agree to participate and there was no legal entitlement to it.
Ability to engage
Patients’ ability to engage was impeded by the balancing act between pacing and giving a true impression of the symptom load. Conscious of their impairments, patients would reduce their daily activity before appointments to make the most out of them just to be told that they appeared to be as healthy as ever.
“It's often so frustrating with doctors as you make an effort, sleep in so you're fit, come in with a list of questions and then they say, yes, it's fine. You're more or less prepared, you've somehow asked reasonable questions, you seem healthy and you haven't actually worked for two days beforehand so you can attend this appointment that you pay for yourself - because you don't get a contracted appointment for anything – but still you're sometimes not even taken seriously.” (P13)
In this context and against the barriers outlined in the Acceptability section, patients found it very helpful if specialists or GPs encouraged them in their self-perception and emphasized the legitimacy of LC. Moreover, being taken serious by medical experts also empowered patients to share their experiences with susceptible doctors – often the respective GPs – in an effort to improve their own care and allow other patients a better experience.
Clinical experts on the other hand described increased patient expectations that they could only partially live up to due to a lack of medical evidence and options. In case patients felt like they were not taken seriously, complaints sometimes helped to change that and some took legal action when being denied sickness benefits. However, their ability to engage was hampered by low energy levels. Patients were exhausted due to their condition and additionally constant administrative tasks, particularly regular medical reports required by statutory health insurance to uphold sick pay. Moreover, the many negative experiences left their marks and patients described being in fear for future appointments.
“Everyone in this round just nodded in agreement, this fear of these expert assessments and of this burden, what is coming next and these discriminatory statements that you hear again and again.” (P4)
Nonetheless, patients were eager to improve conditions for others and help each other. This also led to the establishing of the Long Covid Austria support group on Facebook which was highlighted as very helpful not only for information but also exchanging experiences and having a sense of community. In addition, patients were trying to raise awareness in their local environments, for example by founding further support groups and organizing charity events. By contrast, some patients did not join the Facebook group on purpose as they wanted to avoid the first-hand reports by other LC patients for the sake of their own mental health.
Employment-related changes such as switching to home office or subsidized part-time reintegration helped patients cope with their symptoms. Yet, there also were negative examples such as layoffs during sick leaves or patients going back to work again too soon, impeding recovery. Lastly, while the close social environment posed a major facilitator to patients, constantly providing support for a loved one also took a toll and some significant others had to reduce their working hours due to caring responsibilities or developed physical issues themselves.
Socioeconomic and demographic differences in health and social care access
Five hypotheses on potential differences in experienced access barriers emerged in data analysis. The factors outlined in this section were initially identified based on the patient focus group transcripts and cross-checked with the expert interviews. Moreover, for four out of five hypotheses patients proactively pointed out differences in their own experience that they felt were connected to their socioeconomic and demographic background.
First, very limited service offerings in rural areas seemed to have restricted access, particularly regarding ambulatory specialist care and only few specialists offered teleconsultations. This points at urbanicity as a potentially relevant factor. Further, presumed high health literacy based on patients’ medical background helped them to better navigate the system by connecting symptoms to the relevant disciplines, knowing how to look for services, and understanding diagnoses and recommended treatments. Also, it empowered patients in discussions with medical personnel. Notably, in our patient sample health literacy was approximated based on the profession of participants and experts independently identified it as a potentially relevant factor.
“I'm quite sure that simply having this medical expertise and at least knowing a bit of the terminology has helped enormously and that so many people simply don't have it.” (P17)
Gender-based differences in experience were also pointed out by patients and experts alike. Women described not being taken seriously by medical personnel and being subject to inappropriate insinuations and diagnoses.
“I was also accused by a neurologist, i.e. a contracted neurologist, that I was depressed because I was 27, didn't have a partner at the time and of course wanted to have a child and because I don't have a husband or a child now at 27, I'm imagining it all and I should go on dates and go on vacation and when I come back I'll see that half of my imaginary symptoms are gone.” (P7)
Income and financial background determined the patients’ experience on the one hand directly, as it eased the financial burden, and on the other hand as private complementary insurance can be seen as a proxy for higher income, which in turn minimized the financial pressure. Interestingly, having a complementary insurance did not seem to affect waiting times as capacities were overall scarce and also patients paying out of pocket frequented private doctors but the benefit seemed to be purely of financial nature.
Lastly, age seemed to be potentially of relevance, as younger patients reported not being taken seriously as their symptoms seemingly did not fit the picture of a previously healthy and young person.
“When my mum came to get me, [the doctors] said her son should live a life that befits his age.” (P15)