Specific needs related to long COVID

Patients were asked whether they experienced specific needs due to their health condition that were unrelated to their normal activities of daily living or normal functioning. The pre-specified response categories referred for instance to the need to talk to someone about long COVID or spiritual support. Figure 14 shows the frequency of the different pre-specified response options (patients could indicate more than one response category).

KCE Report 344 Long COVID – Scientific report 157 Figure 14 – Needs of patients related long COVID (n=1 320)

On the question of which additional needs they experienced related to long COVID, the two most frequently reported were: the need to talk to a health professional (32%) and the need to talk to other patients with long COVID (27%). Only 2% of the participants felt the need to be accompanied by a spiritual or religious person.

Respondents could add additional needs in an open field (covered under

‘other needs’ in Figure 14). Among these other needs, there was a need for more understanding of their health condition (mentioned 24 times) by family and friends but also in the professional environment (colleagues, boss). The need for treatment or physiotherapy to relieve symptoms was mentioned 15 times.

Talking about their health condition with someone they trust

More than half of the participants (n=673/1 320) had no difficulty finding someone they trusted to talk to about their condition. On the other hand, 18% (n=235/1 320) said that they had no need for it.

About one in four respondents (347/1 320) reported difficulties to find someone they trust to talk about their health condition.

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5 CONCLUSION

The online survey allowed us to have a good overview of the experiences and perceived (unmet) needs of people who developed long-term health problems after COVID-19 in Belgium.

We analysed the answers of 1 320 participants of whom the majority were women. However, as we are not able to know whether our sample is representative of the population with long COVID, we cannot conclude that long COVID is more frequent in women compared to men. In addition, as discussed below, a large proportion of the respondents were people working in the care sector, and positions in this sector are more frequently held by women. There was also a large proportion of people with a high level of education and who had paid work before acute COVID-19 and around a third were working in the health sector. There were relatively few respondents under 18 and over 75 years of age. This may be partly explained by the type of survey (online) and the fact that people working in healthcare are generally more sensitive to responding to a survey that affects them personally and professionally.

Participants predominantly reported no comorbidities before COVID-19 but hospitalised participants with COVID-19 symptoms for > 6 months reported more frequently comorbidities than the participants with COVID-19 symptoms between 4 weeks and 6 months who had not been hospitalised.

Among the respondents who reported comorbidities, the most frequent were disease of the locomotor system (bones, joints, and muscles), respiratory disease, heart and blood vessel disease and digestive disease. However, these results should be taken with caution. For example, some participants may have reported comorbidity (illness for more than 6 months) when it could actually be a symptom of long COVID. Respiratory diseases in patients with symptoms for more than 6 months are particularly targeted. In addition, our sample is a relatively young population and may not represent the reality with regard to comorbidities as these are more frequently present in the elderly. The majority of respondents reported that their symptoms were confirmed by a health professional as being the result of COVID-19 (by a test or clinical diagnosis of COVID-19). The three most frequently reported

symptoms were fatigue, lack of energy and breathing difficulties and most of the respondents still had symptoms when completing the questionnaire (more than 3 months). General practitioners were the most consulted professionals and the vast majority of long COVID patients is satisfied with the care received (with an exception for emergency care where satisfaction was lower). In addition, satisfaction was also lower in the longer symptom duration group (> 6months after onset COVID-19).

Several impacts of long COVID have been reported by respondents. First, more than half of the respondents with long COVID had an incapacity to work; among them, more than a third were still not back to work. Second, in all five dimensions of EQ-5D-5L, the proportion of respondents with health problems increased after acute COVID-19. The VAS score is also significantly different before and after acute COVID-19. Patients scored their health status as worse after the infection and this was even more pronounced among the participants who had been hospitalised and with long symptom duration (> 6months after the onset of COVID-19). Finally, a financial impact had been reported by more than one in three respondents.

The main explanations given were: the loss or lowering of income due to illness; the increased medical expenses; and direct costs related to long COVID.

Regarding the treatment of long COVID, forty percent of respondents are following or have been following at least one. The most common treatments were prescribed drugs, complementary treatments and over-the-counter drugs. The participants who had been hospitalised and who reported mid or long duration of symptoms more frequently reported following a treatment for long COVID than the participants with short duration of symptoms and who had not been hospitalised. Although the majority of respondents did not find their treatment burdensome, some of them reported the fact that their treatment was tiring, painful and discouraging (i.e. progress was very slow and/or not very visible for example). The burden due to side effects was also mentioned: 27% reported suffering from side effects; the most reported were fatigue or exhaustion and heart palpitations. We observed that the boundary between long COVID symptoms and long COVID treatment side effects is blurred. The condition (as well as the way to treat it) being still poorly known

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seems to complicate the distinction between treatment side-effects (reported in this section) and symptoms of long COVID.

Possible long-term adverse effects from one or more of the treatments were concerns too for some respondents, in particular concerns about side-effects that sometimes lead to other serious health problems or about the lack of effectiveness of medicines or even deterioration of health due to the use of specific drugs.

A secondary aim of our survey was to test whether this methodological approach was appropriate to identify patient needs. More than a third of the respondents reported unmet care needs mainly due to a lack of information, a lack of competent staff, and the very long waiting times to get access to care. Answers to open-ended questions revealed other reasons such as physicians' (lack of) knowledge about long COVID, general attitude of the physicians towards patients complaining, symptoms and patients’ profile not considered to be 'at risk' or health states 'seriousness' to justify a contact with the healthcare system.

There is a need for a (clear) explanation regarding long COVID and its management. Issues with the provision of information were reported by 60%

of the respondents.

Nearly 40% of the participants would like or would have liked to be more involved in the choices about their treatment(s) for long COVID.

Needs for support with activities of daily living were explored as well: more than one in two patients suffering from long COVID required support with activities of daily living. The participants with symptom duration of > 6 months post-acute COVID-19 and who were hospitalised reported more frequently to need help with activities of daily living than participants with 4 weeks-6 months symptom duration who were not hospitalised. Participants needed the most help with cleaning, preparation of meals and transportation/journeys with an important role played by informal caregivers.

Other expressed needs were shopping and/or carrying heavy things, caring for children and pets, administrative tasks (including making medical appointments or asking questions to healthcare professionals and the need for companionship, listening and moral/psychological support was

mentioned too. There were also needs resulting specifically from the symptoms of long COVID i.e. needs to ‘compensate’ for long COVID problems such as problems with concentration or memory.

On the question of which additional needs they experienced related to long COVID, the two most frequently reported were: the need to talk to a health professional and the need to talk to other patients with long COVID. Other reported needs were a need for more understanding of their health condition by family and friends but also in the professional environment (colleagues, boss) when about one in four respondents reported difficulties to find someone they trust to talk about their health condition.

Our study is suffering from limitations, some of these have already been mentioned above.

First, as noted above, it is not clear whether the sample studied is representative of the Belgian population with long COVID. Indeed, women and health workers were overrepresented in the sample. On the other hand, some groups were underrepresented, especially children (<18 years) and elderly (>75 years; who have been particularly affected by the COVID-19 pandemic). The choice of an online survey played a role in the fact that the sample is not representative of the Belgian population suffering from long COVID.

An online survey also does not prevent some people from answering the survey more than once. For example, some people might have experienced a change in their condition during the survey and therefore decided to respond more than once. Unfortunately, it is not possible to control for this type of potential bias because it was not possible to send a personal invitation to participate in the survey.

The duration of symptoms after acute COVID-19 and other significantly related factors may have been impacted by the cohort effect. This means that not all individuals experienced COVID-19 at the same time and that their responses may be influenced by this factor. Since we did not know the date of infection, we did not correct for this factor. However, most analyses were performed by symptom duration subgroup, which partially circumvents this limitation.

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There was also a problem with the understanding of some questions asked in the survey, which appeared in several ways: a discrepancy in the answers given (respondents did not answer the question asked, they went off-subject or they tended to anticipate the next questions or the open box was an opportunity for them to express their dissatisfaction on one or more points).

It was not uncommon for participants to answer the next question.

In addition, some respondents seemed to confuse the (unmet) needs they had during the acute phase of COVID-19 with the needs they (had) during their long COVID.

Finally, the answers to the open-ended questions were sometimes difficult to interpret, often because the respondents were not explicit enough in their answers. Furthermore, for the same question, respondents with the same profile could give different answers (e.g. when some self-employed people said that they did not receive any income during their long COVID while others said that they received allowances (bridging rights or minimum income).

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CHAPTER 5. QUALITATIVE