Treatments and satisfaction

Just under half of respondents are following (or have followed)

‘treatment’ for long COVID. Hospitalised participants reported following a treatment for long COVID more frequently than the participants who had not been hospitalised. The most common treatments were prescribed drugs, complementary treatments and over-the-counter drugs.

To the question, « Are you taking (or have you taken) any treatment for your long COVID? », 41% of respondents (545/1 320) answer ‘Yes’. Patients who had been hospitalised reported significantly following a treatment for long COVID more frequently than the participants who had not been hospitalised (hospitalised: 64.4%; not hospitalised: 37.8%; p-value<0.001). The patients with short duration of symptoms (4 weeks-3 months) reported following a

treatment for long COVID significantly less frequently than the patients with mid or long duration of symptoms (short vs. mid: 35.2% vs. 40.5%, p-value=0.04 ; short vs. long: 35.2% vs. 45.0%, p-value=0.02). The majority of participants was taking a prescribed drug (71.0%) and/or a complementary treatment (54.1%), like vitamins, homeopathy, naturopathy, food supplements, etc. (Table 44). Among the participants who received prescribed, complementary or over-the-counter drugs, only a little more than a half were very satisfied or satisfied with the treatment received (satisfied or very satisfied: prescribed drugs 57.3%, complementary drugs 57.5% and over-the-counter drugs 55.8%).

The proportion of participants who followed prescribed drugs, complementary treatment, over-the-counter drugs and oxygen at home for long COVID was significantly higher amongst participants who had been hospitalised than amongst the non-hospitalised respondents (Table 44).

Table 44 – Self-reported treatment for long COVID, by hospitalisation status

Treatments Hospitalised (n=112)

N (%)

Not hospitalised (n=433) N (%)

p-value Total (n=545) N (%)

Prescribed drugs 89 (79.5) 298 (68.8) * 387 (71.0)

Complementary treatment 46 (41.1) 249 (57.5) ** 295 (54.1)

Over-the-counter drugs 16 (14.3) 100 (23.1) * 116 (21.3)

Physiotherapy 14 (12.5) 47 (10.9) NS 61 (11.2)

Multidisciplinary rehabilitation 7 (6.3) 15 (3.5) NS 22 (4.0)

Oxygen at home 14 (12.5) 3 (0.7) *** 17 (3.1)

Other 4 (3.6) 13 (3.0) NS 17 (3.1)

Olfactive therapy 0 (0.0) 7 (1.6) NS 7 (1.3)

Respiratory assistance 1 (0.9) 1 (0.2) NS 2 (0.4)

Osteopathy 0 (0.0) 2 (0.5) NS 2 (0.4)

Nervous vagus stimulation 0 (0.0) 2 (0.5) NS 2 (0.4)

Speech therapy 0 (0.0) 2 (0.5) NS 2 (0.4)

*Chi-squared p-value<0.05, **Chi-squared p-value<0.01; ***Chi-squared p-value<0.001; NS=Not significantly different

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The duration of symptoms was not significantly associated with the reported treatment (Table 45).

Table 45 – Self-reported treatment for long COVID, by duration of symptoms

Treatments Short

N (%)

Mid N (%)

Long N (%)

p-value

Prescribed drugs 65 (69.1) 149 (76.0) 173 (67.8) NS

Complementary treatment 44 (46.8) 110 (56.1) 141 (55.3) NS

Over-the-counter drugs 27 (28.7) 38 (19.4) 51 (20.0) NS

Physiotherapy 11 (11.7) 17 (8.7) 33 (12.9) NS

Multidisciplinary rehabilitation 2 (2.1) 6 (3.1) 14 (5.5) NS

Oxygen at home 4 (4.3) 9 (4.6) 4 (1.6) NS

Other 2 (2.1) 5 (2.6) 10 (3.9) NS

Olfactory therapy 0 (0.0) 3 (1.5) 4 (1.6) NS

Respiratory assistance 1 (1.1) 0 (0.0) 1 (0.4) NS

Osteopathy 0 (0.0) 1 (0.5) 1 (0.4) NS

Nervous vagus stimulation 0 (0.0) 0 (0.0) 2 (0.8) NS

Speech therapy 0 (0.0) 0 (0.0) 2 (0.8) NS

Short: 4 weeks-3months; Mid: 3 months-6 months; Long: ≥6 months; missing duration n=2; Chi-squared, NS=Not significantly different

More than half of the respondents with treatment does not consider it as burdensome

The majority of respondents (52.5%; 286/545) did not find their treatment burdensome (Table 45). Yet 259 out of 545 respondents indicated that there was a burden: 142 (26%) found it rather burdensome, 73 (13.4%) very burdensome and 44 (8.1%) extremely burdensome.

Table 46 – Burden of treatment (n=545)

N (%)

Not at all burdensome 286 (52.5)

Rather burdensome 142 (26.1)

Very burdensome 73 (13.4)

Extremely burdensome 44 (8.1)

The most frequent reason why respondents experienced some kind of burden was because it reminds them constantly to take care of their medical condition/treatment (n=140 or 54%). Burden due to side-effects was also frequently mentioned (42% or 108/259) (Figure 11).

KCE Report 344 Long COVID – Scientific report 147 Figure 11 – Reported reasons why treatments were experienced as rather, very or extremely burdensome (n=259)

Box 4 presents other reasons reported by those who did find their treatment burdensome.

Box 4 – Other reasons reported to by those who did find their treatment burdensome

The treatment was tiring (n=11). Fatigue could, according to the participants, take several forms: fatigue related to multiple journeys, multiple consultations but some participants expressed the fact that it was the rehabilitation session itself that was tiring and required a lot of energy.

‘Te vermoeiend’ ‘prend beaucoup (…) d'énergie’

The treatment was painful (n=14): for instance the rehabilitation sessions could be painful but patients also complained about pain after the rehabilitation sessions.

‘Pijn tijdens de behandeling (osteopathie)’ ‘Na de kinesitherapie (0,5h) (…) had ik achteraf ook extra spierpijn’

The treatment was discouraging (n=9): progress was very slow and/or not very visible. Patients are confronted with their limits, feel alone/isolated or not listened to by medical professionals, experience a lack of follow-up or consideration for their situation.

‘Sous puff de cortisone depuis des mois, plusieurs fois par jour, pas vraiment d'évolution, j'en ai marre!’

‘Dagelijks inspanningen leveren en heel weinig vooruitgang.’

Other reasons mentioned (n=18): time consumption, cost, impact on professional and/or family life.

148 Long COVID – Scientific report KCE Report 344

Reported side effects: difficult to distinguish from long COVID symptoms

Among the respondents who are following (or have followed) treatment for long COVID, 27.2% reported suffering from side-effects (n=148/545).

The most reported side-effects of the long COVID treatment were fatigue or exhaustion (19.6%), heart palpitations (13.5%), constipation and/or diarrhea (9.5%), headaches (7.4%), shortness of breath and breathing difficulties (6.8%), abdominal pain (6.8%), nausea/vomiting (6.8%), high blood pressure (6.1%) and dry mouth (6.1%) (Table 46). Several headings are found in both categories (treatment side-effects or long COVID symptoms).

Fatigue, for instance, is the most frequently reported side-effect of treatment and the most frequently reported symptom of long COVID (see subsection 4.2.1). These results should be interpreted with caution.

Table 47 – Top 10 most reported side effects of long COVID treatment (n=148)

Side effects N (%)

Fatigue and/or exhaustion 29 (19.6)

Heart palpitations 20 (13.5)

Weight gain 20 (13.5)

Constipation and/or diarrhoea 14 (9.5)

Headaches 11 (7.4)

Shortness of breath, breathing difficulties

or respiratory problems 10 (6.8)

Abdominal pain 10 (6.8)

Nausea/vomiting 10 (6.8)

High blood pressure 9 (6.1)

Dry mouth 9 (6.1)

Only 24% of the respondents (132/545) were concerned about possible long-term adverse effects from one or more of the treatments they received to treat their long COVID. Participants had two types of concerns (see Box 5).

Box 5 – Main concerns about possible long term adverse effects from long COVID treatments

Concerns about the consequences of COVID-19 and/or long COVID (n=72): these consequences did not answer the question asked about treatments and were therefore excluded from the analysis.

Concerns about taking medication for long COVID (n=42):

- concerns about possible dependency that could develop when medicines are taken over a long period of time (n=4).

‘Dosage difficile, dépendance’

‘Dank zij de puffers is de pijn op de borst dragelijker. Maar ik ben bang dat dit misschien permanent zal zijn ...….. en niet na maanden zal verdwijnen en ik afhankelijk zal blijven van deze medicatie’

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 (n=38)

‘Langdurig gebruik corticosteroïden verzwakt het immuunsysteem’

‘Beaucoup de médicaments et peut-être un risque de problème hépatique’

‘J'ai l'impression que je ne guéri pas et que mon état se dégrade avec des traitements’

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