Socio-demographic profile of study sample
Data were collected on 31 patients, 16 of whom were male. Average age was 58.5 ± 16.4 years (28–87 years). Most patients (21) were living with a partner and had support from loved ones (Table 2).
Table 2
Characteristics of patients and the primary care (i.e., pre-hospital) pathway duration
| Duration of primary care pathway | Short ≤ 3 days | Intermediate 4–9 days | Long ≥ 10 days | Total |
| No. of patients | 9 | 16 | 6 | 31 |
| Socio-demographic characteristics |
| Average age (years) | 67,3 ± 13.4 | 56,3 ± 15.6 | 51,2 ± 15.5 | 58,5 ± 16.1 |
| < 50 | 2 | 6 | 2 | 10 |
| 50–70 | 2 | 5 | 3 | 10 |
| > 70 | 5 | 5 | 1 | 11 |
| Female sex | 4 | 8 | 3 | 15 |
| Living alone | 2 | 6 | 2 | 10 |
| Average number of comorbidities | 2.77 ± 1.6 | 1.6 ± 1.5 | 1.67 ± 1.2 | 1.9 ± 1.6 |
| COVID-19 screening tests |
| One or more negative tests before testing positive | 0 | 5 | 4 | 9 |
| No positive test | 1 | 0 | 1 | 2 |
| Use of primary care system |
| Average number of times the patient used the primary care system | 1.1 | 1.9 | 2.17 | 1.7 |
| No. of times primary care system was used |
| 0 | 3 | 0 | 1 | 4 |
| 1–2 | 6 | 13 | 2 | 21 |
| > 2 | 0 | 3 | 3 | 6 |
| Type of primary care use |
| GP consultation with physical examination | 4 | 11 | 3 | 18 |
| GP video or telephone consultation | 2 | 2 | 1 | 5 |
| Unable to get an appointment with GP | 0 | 2 | 1 | 3 |
| Did not seek a GP consultation | 3 | 1 | 1 | 5 |
| Hospitalized (ED and/or admission) without first consulting a GP | 3 | 3 | 2 | 8 |
| ED consultation with immediate discharge | 1 | 3 | 4 | 8 |
| COVID-19 treatment |
| Receiving antibiotic treatment | 0 | 3 | 2 | 5 |
| Decision to hospitalize patient |
| Patient | 0 | 2 | 2 | 5 |
| Loved one | 3 | 7 | 3 | 13 |
| Spouse | 2 | 5 | 1 | 8 |
| Family (other than spouse) | 1 | 1 | 1 | 3 |
| Friend | 0 | 1 | 1 | 2 |
| GP | 2 | | 1 | 5 |
| Physician other than GP | 2 (22.2%) | 3 (18.8%) | 0 | 5 (16.1%) |
| Other health professional | 2 (22.2%) | 2 (0.125%) | 0 | 4 (12.9%) |
| Hospitalization |
| Intensive care unit | 2 (22.2%) | 5 (31.2%) | 3 | 10 |
| Length of stay in IHU/CHU | 6,1 ± 2.5 | 7.9 ± 7.4 | 5.8 ± 3.4 | 7 ± 5.8 |
| Sequelae at time of study |
| All types of sequelae | 4 | 8 | 4 | 16 |
| Desaturation | 5 | 9 | 5 | 19 |
| Inability to eat | 0 | 6 | 4 | 10 |
| Confused state | 0 | 7 | 2 | 9 |
Three categories of care pathways
The average primary care pathway duration (i.e., between symptom onset and the day of hospitalization) was 7.12 ± 4.3 days (0–16 days). From these pre-hospital timeframes we identified three types of pathways as follows: short pathways, which were less than or equal to 3 days; intermediate pathways, which were 3–10 days long; and long pathways, which were lasted more than 10 days. Patients were hospitalized for a mean of 7.55 days (± 5.8), and nearly one-third (n = 9) were transferred to an ICU after being hospitalized in the IHU/CHU departments. Over half the patients had COVID-19 sequelae (n = 16) at the time of the study interview (3–12 months after diagnosis).
Below, we will first present the similarities between the three different primary care pathways (i.e., clinical history, role of screening, recourse to primary care leading to diagnostic delay, and the key role of family and friends in the decision to be hospitalized. We will then describe the specificities of each pathway.
Similarities in pre-hospital pathways (Table 3)
Table 3
Similarities in pre-hospital pathways: verbatim
| Theme | Verbatim discourses |
| Clinical history: increasing severity of non-specific symptoms | NK 239: “Every day I felt more fragile. I wasn’t eating anything...; I started to have more and more headaches, I started to cough, I couldn’t stand up, I vomited... I had everything, the whole thing. Vomiting, diarrhoea, fever, headaches, aches, and pains... everything. By Sunday, I was already knocked out, dead.” “B9: “the first symptoms for me were a lot of fatigue, pain in the legs” CL 253: “I didn't eat, I didn't drink, I didn't do anything, I stayed in agony on my sofa.” R5: “Nothing was working anymore, I was exhausted, exhausted!“ MG 206: “ I don't remember if it was six or eight hours. I was completely out of it, “ ET 440: “I was in a state... I was completely out of it. (...) I wasn’t myself at that time.” EP 361: “And when I collapsed, I collapsed on the floor, I fainted with perspiration, my girlfriend picked me up” |
| The experience of COVID-19 screening tests | C8: “I had gone to do the antigenic tests, which were negative, but I thought it was strange all the same ... And as I was told that the antigenic tests were not very reliable, etc., that they had a percentage of error. I said to myself, given the strange headache that I had, I said to myself, I'm going to do a PCR test anyway, we'll see if ...“ R5: “I did antigenic tests for 3 days. Every day, because I was really extremely tired, so I was trying to understand, I asked myself the question, I said to myself, maybe it's COVID, maybe it's COVID, I don't know... “ |
| Numerous and unsuccessful attempts to see a GP | R5,: “It was complicated, I couldn't find a doctor…In fact, if you want, when you call a doctor and you describe your symptoms, even if you don't have COVID defined as such, he would say to you "well stay in isolation, and if it doesn't get better, call us or call 15 [emergency services]''. VC 112: “I called my GP who told me that in any case I should visit an ED or call 15” C8: "I told them that I wasn’t at all well, and they told me no, it’s nothing, it will pass, it’s normal"; Frankly, he relied on his... on his stethoscope ‘breathing is fine, saturation is fine, so there’s no worries, that’s all, the fever is normal, it’s part of the symptoms of COVID.... In a few days it will be fine, in 2–3 days it will go away’... But in the end, it didn’t go away... On the contrary, it got worse.;… They are given instructions, they apply them, they rely on their results, but not on what the patients say. " JB59: "They had me leave [the ED)at night, they even wanted me to take the car. I told them I couldn't do it; I fell on the floor. But they told me ‘No, no, it's okay, go home’. " SR 288: “On Friday, I don't know, I called him back, he said ‘it's going to be alright, hold on’. And then I phoned him on Sunday and said, 'I can't breathe’, and he told me to call the emergency number and that’s about it.” NK 239: "I called my doctor again. I told him ‘Doctor, I'm going to die, if this goes on I'm going to die'. He told me 'It's normal, COVID does this, you're fragile, and you have fragile health, it's normal to have all this'.” |
| Unawareness of the severity of one’s own condition | R5: “I didn't answer the phone because I was tired. “… You don't even think about saying ‘I'm sick, you just think, that's it, I just have to think about breathing, I have to think about breathing.’” CL 253: "Clearly, I was waiting for it to pass…I stayed at home, I couldn't do anything anyway, I was so sick. I had a fever that wouldn't go down, nausea all the time, I wasn't eating, I was barely drinking." |
| The decisive role of family and friends | JB 59: “I was really, well, unconscious, I don't remember anything; my husband was there. He was looking after me. “ NK 239: “My husband called them; he said ‘my wife is going to die, she is not well at all’”. B9: “And one evening when my wife came back from work, I told her ‘I’m not well’. What did she do? She put me straight into the car and took me to the emergency room” MG 206: “Sunday or... well, it's all a bit vague, I was really tired. In any case, I know that my wife called the ambulance, and that they came to get us at home. “ VC 112: “I was doing a Zoom meeting with some friends. I was deathly pale, almost a pale blue, and they got scared and said, ‘Call an ambulance right away, because something bad is happening to you’. EP 361: “I’m lying on the floor, blacked out, and my girlfriend picks me up, drags me into the car, and drops me off at the emergency room.” R5: “I have a friend who tried to contact me for 2 or 3 days. He couldn't. He came knocking to see if I was okay, because he knew I had COVID; I wasn't answering the phone because I was tired (...); he broke the door, and when he saw my condition, he put me in the car and went to the emergency room.” |
Clinical history: increasing severity of non-specific symptoms
Clinical history was similar for all 31 patients, beginning with the onset of intense and unusual fatigue often associated with cough or flu symptoms. Over the next few days, most patients described a deterioration of symptoms; specifically, asthenia became disabling and coughing increased, interfering with eating. As the disease progressed, the impact of the symptoms continued to intensify and patients’ ability to move about, eat, and seek medical attention became increasingly difficult.
NK 239: “Every day I felt more fragile. I wasn’t eating anything...; I started to have more and more headaches, I started to cough, I couldn’t stand up, I vomited... I had everything, the whole thing. Vomiting, diarrhoea, fever, headaches, aches, and pains... everything. By Sunday, I was already knocked out, dead.”
In addition, nine patients spoke of a state of confusion (including cases of fainting) which impaired their ability to assess their overall condition.
The challenge of the screening test
Screening positive for COVID-19 was the gateway to receiving primary care which may or may not have subsequently led to hospitalization. Physicians and patients ruled out COVID-19 when a test returned negative.
This process was very detrimental for patients who could not access testing, for those whose results were delayed, and for those who had a false-negative result. Of the 31 patients interviewed, 9 reported that their COVID-19 symptoms deteriorated from one day to the next (cf. life-events calendar above) and at least one negative test (prior to a positive one). False-negative tests were often associated with chaotic pre-hospital pathways. One patient had had 4 tests which tested negative (probably all false-negatives) despite having symptoms before finally testing positive.
Patients described primary care as not effective.
A majority (n = 28) of respondents felt GP were an important primary care resource for COVID-19, with only three respondents declaring the contrary.
Most patients (n = 21) had consulted a GP after testing positive: 16 patients had a physical examination and 5 had a video consultation, while 8 patients had consulted in a hospital ED and were immediately discharged (the physicians there providing a negative diagnosis).
In total, patients had used the primary care system an average of 1.7 times during their primary care pathway. Only 4 patients were hospitalized without first consulting a doctor: two lived in a nursing home and were brought to hospital by staff, one suffered from severe comorbidities which led his family to call an ambulance, and the last patient was a self-medicating physician.
In most cases, the participant’s GP had prescribed and/or performed the COVID-19 test which resulted positive. GP had reminded patients of the guidelines for self-isolation ref and the procedure to follow in case of a deterioration of symptoms (i.e., calling the Emergency Medical Services, or consulting in a hospital ED).
Among the 27 who had seen a doctor (GP or ED physician), 7 felt that that the doctor did not adequately consider the severity of symptoms.
A 35-year-old patient with no comorbidities visited the same medical centre three times before hospitalization. He described feeling misunderstood and even angry about the primary care he received.
C8: "I told them that I wasn’t at all well, and they told me no, it’s nothing, it will pass, it’s normal"; Frankly, he relied on his... on his stethoscope ‘breathing is fine, saturation is fine, so there’s no worries, that’s all, the fever is normal, it’s part of the symptoms of COVID.... In a few days it will be fine, in 2–3 days it will go away’... But in the end, it didn’t go away... On the contrary, it got worse.;… They are given instructions, they apply them, they rely on their results, but not on what the patients say. "
One patient who called her GP felt that he never took her seriously.
NK 239: "I called my doctor again. I told him ‘Doctor, I’m going to die, if this goes on I'm going to die'. He told me 'It’s normal, COVID does this, you’re fragile, and you have fragile health, it’s normal to have all this'.”
Finally, her husband took the initiative to bring her to an ED.
Only five of the 31 patients had received treatment other than paracetamol. Two of these self-medicated. One was a GP, while the other used his asthma treatment (corticosteroids). The other three were prescribed antibiotics.
Patient denial of the severity of their condition
A majority of patients were unaware of the severity of their illness. They explained that this was because of extreme fatigue which put them in a state of confusion. The miscomprehension of their true condition could also be explained by the negative test results and/or mistaken reassurance from inaccurate GP medical consultations.
R5: “I didn’t answer the phone because I was tired.... You don’t even think about saying I’m sick, you just think, that’s it, I must just think about breathing, I have to think about breathing.
One participant, a 28-year-old nursing patient who tested positive, self-isolated at home for six days without seeing her GP, despite her general condition progressively deteriorating.
The decisive role of loved ones
Loved ones played a very important role especially given the asthenia patients experienced. They intervened in care when they saw the patient’s health deteriorating and his/her inability to act. Specifically, loved ones were often the ‘trigger’ person to decide that the patient had to be hospitalized. Thirteen participants were hospitalized by loved ones either directly (i.e., they took the patient to a hospital ED or called the emergency services) or indirectly (insisted that the patient’s GP take action).
Specificities of the different types of primary care pathways (Table 4) :
Table 4
Specificities of the different types of pre-hospital pathways: verbatim
| Themes | Verbatim |
| Short-duration pathways | ADP 148: “So I got COVID, my husband got it from me, I think. When he was screened, he was fine, he had no symptoms, and suddenly a few days later, in the middle of the night I had to call the fire brigade. He had respiratory failure. So, they took him straight to the emergency room (...); they did some tests, they let him out. They said he was better. Two days later, in the middle of the night, it started again, so I called the fire brigade urgently. He was still suffering from respiratory insufficiency. (...) And from there they kept him in hospital for two months.” |
| Medium-duration pathways | V4:” I had a headache, that's all; I did the test, so the first time it was negative ; Headaches, I couldn't feel what I was eating. I also lost my sense of smell and I lost 8 or 9 kilograms…. He examined me and told me that my saturation was low. He told me that I had to go to the hospital urgently. I went to the hospital's emergency room, and there I was found to have a pulmonary embolism, and I was hospitalized for a few days. |
| Long-duration pathways | R5 “No, actually you don't have the strength... And frankly given my state, clearly, I didn't even have the possibility to think. “ R5: “I feel like I've aged 10 years! All my gestures are complicated, when I say my gestures, I mean climbing stairs, walking, doing sport, everything is complicated. And then there is also weariness for many things… “ C8: "so they told me it was probably a flu, something, like a viral thing so uh.... They hadn't given me any antibiotics, so I went home." |
Short care pathways
In many cases, short care pathways corresponded either to at-risk patients monitored by their GP or to patients who quickly tested positive and whose condition deteriorated rapidly after the symptom onset.
One participant, a retired patient who breathing by tracheotomy, had a positive PCR shortly after his wife tested positive. His condition deteriorated very rapidly; in less than 24 hours he went into respiratory failure. His wife called an ambulance which took him to the ED where he was examined before being sent home. Two days later, the episode was repeated, this time the patient being admitted the IHU. He remained there for two months.
Intermediate care pathways
A slight majority (51.6%, n = 16) of the participants had an intermediate care pathway. This group was more heterogeneous than the other two groups.
Most of these patients experienced a deterioration of their general health condition around day 7 after system onset. Patients in this group who were hospitalized on or close to the fourth day after symptom onset, knew they were contact cases and tested quickly after symptom onset.
A typical case of a participant with an intermediate care pathway was a man in his seventies who lived with his wife. His first symptoms were fatigue, headache, and fever. He had been infected at a social event with friends. He did an antigen test on day 4, which was negative. His condition gradually worsened, and he consulted his GP a week after symptom onset. His doctor reassured him that his difficult breathing was not due to COVID-19, as the test on day 4 had ruled it out. He did not have a fever. The patient did not remember the doctor measuring his oxygen saturation or recommending any monitoring measures. That same evening, faced with deteriorating dyspnoea, his wife took him to the ED where he was diagnosed with COVID-19 complicated by a pulmonary embolism.
Long care pathways
Young patients (i.e., < 50 years) were more likely to have long care pathways. They had often visited their GP and an ED several times and were - in their view – not taken seriously. Patients with a long care pathway were more likely to have been admitted to an ICU after a stay in IHU/CHU for COVID-19, and to present severe symptoms. Long care pathways were characterized by more patients who had false-negative tests, leading to a mistaken belief that they did not have the disease.
One example is a 49-year-old woman suffering from high blood pressure and overweight. She lived alone and was not registered with a GP. Her first symptom was asthenia. She tried to visit a GP without success and ended up going to the ED four days after symptom onset. She was sent home, as her PCR test was negative and her clinical examination was normal. Over the next few days, her general condition deteriorated; several antigen tests all tested negative. She became increasingly tired; she said that she got "used to her condition" and did not try to look after herself anymore. She was found unconscious on the floor by a co-worker who went to her home out of concern that she was not answering her phone.
R5: “I feel like I’ve aged 10 years! All my gestures are complicated; when I say my gestures, I mean climbing stairs, walking, doing sport, everything is complicated…. I felt extreme tiredness to do even the slightest action or make the smallest decision. ”
One patient described a chaotic primary care pathway. He was a 35-year-old man with no comorbidities and in good general condition. Two days after symptom onset, he performed an antigen test and a PCR test, both of which were negative, and visited a medical centre as his GP was himself hospitalized for COVID-19. Given the negativity of the tests, the doctors ruled out a diagnosis of COVID-19.
C8: "So they told me it was probably a flu, something, like a viral thing, so.... They didn’t give me any antibiotics, so I went home."
His general condition deteriorated thereafter, and he developed new symptoms including abdominal pain and diarrhoea. He visited the same medical centre for a second consultation. The doctors diagnosed gastroenteritis. Five days after the first symptoms, he had a third test, which was positive. A few days later, he went to the same medical centre for a third time.
C8: "They knew it was for COVID, they gave me .... Well, they told me there was nothing to do, that I had to take paracetamol, and that’s about it..."
Finally, the next day, his wife decided to call an ambulance. He was transported to the ED where he was admitted to the CHU department after the results of an arterial blood gas analysis.