Long COVID as a never-ending puzzle: the experience of primary care physicians. A qualitative interview study

Definition and symptoms of long COVID

The results of the study indicated the lack of a single (holistic) definition of long COVID. Although the term is used in medical literature and in clinical practice, practically all interviewees stated that they had difficulties in establishing a diagnosis of long COVID. In doing so, they resorted to the literature, but mostly they helped themselves with the patient’s symptoms.

Another important indicator of the definition of long COVID was the duration of patients’ problems. The interviewees indicated that patients were diagnosed with long COVID if the problems manifested for >3 weeks after contracting the virus, and noted that the problems could last for several months or even years. Table 2 shows the dilemmas and problems that physicians perceived in diagnosing and interpreting symptoms.

In seeking to understand why interviewees in this study were particularly challenged and perplexed by the emergence of long COVID, the authors consider the following scenario to be possible: long COVID is a newly emerging concept with no fixed and agreed pathognomic symptoms or signs that can specifically describe this condition; instead, it is a constellation of various symptoms and/or signs. It is possible that patients with medically unexplained symptoms are now being included under the category of 'long COVID' when presenting to primary care, whether or not these symptoms are, ultimately, a result of COVID infection (a causal relationship which cannot easily be determined in the absence of agreed diagnostic tests for long COVID). As such, GPs such as those interviewed in this study are seeing a large number of patients correctly or incorrectly labelled as having long COVID, with a wide variety of non-specific symptoms. Some of these symptoms may not be connected to COVID infection and may therefore be confounding both diagnosis and treatment approaches. In terms of practically helping patients diagnosed with long COVID, GPs lack new approaches to address these situations, and have no algorithms to follow or therapeutic trials to conduct. As such, the interviewees found themselves scrambling to help their patients, questioning themselves on what to do with them, and constantly reviewing and re-evaluating their symptoms, signs, and diagnoses, just like a detective would in a challenging cold case.

Social exclusion

The statements of the interviewees confirmed that COVID-19 has changed people’s and physicians’ lives to a large extent. Social exclusion, loneliness, working from home, and the hardships of those socially at risk are some of the indicators that point to the social consequences of long COVID:

'Everything sort of died with COVID. I’d say that was also a long-term consequence of COVID. It will take a while for things to fall back in place again. I don’t know about my colleagues, but what I especially miss is more authentic contact.' (GP14)

'In fact, we are quite isolated, because we have our own practice. Sometimes you call someone for something, because we have telephones ...' (GP 8)

The already long waiting periods in the system have been further complicated by the COVID-19 pandemic. The fact that everything now took place even more slowly, taking into account the strict anti-COVID-19 measures in health care, made the patients even more frustrated:

'On the part of patients, their expectations are too high, they complain about long waiting times for specialists.' (GP3)

Physicians shared the opinion that real problems with patients are yet to come and that they often cannot be solved at the level of primary health care, so they turn to specialists, in this case psychiatrists:

'In the psychological field, there is a huge problem that I don't know how we will solve it. Even with the fact that some of our colleagues and some of the patients [confronted with the consequences of long COVID-19] think they are for a psychiatrist. We are not capable of solving these things.' (GP7)

Sick leave and returning to the work environment

After 1 month of a patient's absence from work, the physician must send the documentation to the Institute for Health Insurance, which decides on the extension of sick leave. Documentation must be supported by the most measurable results if possible. Regardless of the fact that people had problems, the physician was not always able to define these problems as sufficient criteria that mean the patient is unable to work. This is a completely different situation from any other disease, which can be defined as having a beginning and end:

'The problem is that you don’t have a reliable report based on which you can justify that the patient has problems, despite the fact that he really does have problems. I can’t write that the patient is tired and I’m asking for an extension of the sick leave for 14 days. After 14 days he’ll still be tired.' (GP15)

'The end of treatment/rehabilitation is more predictable for patients that are on long-term leave due to some other illness or injury, but with long COVID you don’t know when the treatment will even end.' (GP4)

'Then they say, it’s just that I’m not quite well yet. And I tell them that, unfortunately, they may not be completely well for another 6 months, and that unfortunately we can’t extend the sick leave until they feel completely OK. And this is very problematic. Some people go back to work, but they still don’t have the capacity because they’re still not OK.' (GP1)

In addition to all the complications with health, people find it difficult to return to the work environment after long COVID. Sometimes it is the work environment that requires adjustments, and sometimes patients just do not feel useful and capable. Some patients lost their job:

'This week I had a patient with long-term muscle pain after COVID, but it was clear that it was more a result of the psyche, and he already had previous mental problems. Now he has lost his job and this situation complicated everything. With the other lady, there was also a loss of employment and I had the feeling that this was her major problem.' (GP1)

'It’s an interesting story of a young programmer, I think he’s 42-years-old, who needed almost 8 months to recover to the same intellectual or cognitive level. The neurologists took over his case; he went to them for treatment. They confirmed progress through testing. He used to work 10, 12, 15 hours a day, and then he only managed 3–4 hours due to poor concentration. After 8 months, however, his condition improved.' (GP17)

'However, there are several such people who may not have been satisfied with their job before and for whom the fact that they contracted COVID is a good reason to remain on sick leave.' (GP7)

Cooperation with rehabilitation centres

As an insidious disease, long COVID requires long-term treatment, which also includes clinical treatment, hospitalisation, and rehabilitation measures. In this case, the interviewees pointed out some of the problems they faced in their work. In particular, they pointed out the lack of a unified register and guidelines for treating patients with long COVID.

They also emphasised the poor connection between the post-COVID clinic and rehabilitation centres. Sometimes the services of rehabilitation centres are not covered by the insurance company (they are not part of the public health system), which means that the patients themselves have to pay for the rehabilitation, which the interviewees pointed out as a serious problem:

'I sent the patients to the post-COVID clinic with the hope that rehabilitation would also be offered, but this wasn’t the case. Faster diagnostics and no smart action.' (GP3)

'I think that there are self-paying post-COVID rehabilitation-type services at spas and health resorts; the problem is that patients have to pay for it themselves.' (GP1)

'There should be some centres where patients could be referred and then they would determine whether it is really post-COVID syndrome or prolonged COVID. Now patients get a bunch of referrals and wait.' (GP2)

The importance of trust and good communication with the patient

When managing patients with long COVID, all interviewees pointed out the path of communication between physicians and patients. In this context, the interviewees also talked about an 'alliance' and the importance of mutual trust:

'It’s necessary to understand them, it’s necessary to develop an alliance. I approached this according to the principle of relief, alliance, and support. This concept worked best. Trust has to be established so things will get better, but that takes time. If you had an open conversation to make the patients aware that it was worse at the beginning and is getting better now, they were more reasonable.' (GP1)

'The basis is that he trusts you, that you really believe him. This is basic. To try my best to show through verbal and non-verbal communication that I believe him that he really has problems.' (GP9)

Practically all the interviewees pointed out that it is a lengthy process because long COVID is treated in a family physician’s clinic. Trust is therefore crucial because in this case the physician acts not only as a medical professional, but also often as an arbiter between the patient and the employer. Mutual trust was therefore crucial:

'I think that it’s often the case that patients basically decide for themselves and think that if they can’t do something at home or that they’re tired, that they’re unable to work, then of course you’ll give them sick leave. As far as that’s concerned, we’re the ones that will say whether they go on sick leave or not.' (GP5)