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'An all-disruptive disease that brought my life to a standstill.' This is how Michiel Bal (47) from Groningen describes post-COVID. In September 2020, he contracted corona. It was the beginning of a turbulent period. 'I just didn't get better, was in bed for months and could do almost nothing. And that while I was always fit and active. Unimaginable.' After a long process of rehabilitation and rebuilding step by step, Michiel has now largely recovered. However, he is not completely the same. 'I am now working on giving everything that happened a place. That takes time.'
The story of Michiel Bal is illustrative of many people who experience symptoms post-COVID. An earlier study of the UMCG already showed that 1 in every 8 people in the Netherlands will remain symptomatic long-term after diagnosed with COVID-19. In recent months, in-depth interviews have been held with post-COVID patients and, together with data from Lifelines, a more detailed study was done of the causes and effects of post-COVID. The results were presented at the UMCG on Thursday 13 April.
The studies lift the veil in particular on the personal effects and the social impact of post-COVID. Not much is known yet about what causes post-COVID. ‘Both patients and healthcare providers experience the care for people with post-COVID as an arduous search’, relates UMCG researcher Jeanet Landsman, who developed a guide, with patients and healthcare providers, for a Care Pathway for post-COVID patients. This is a plan which covers what is done by which care giver, when and why.
Landsman foresees that family doctors can play a significant part: ‘It is important to give patients the correct information and support, preferably in primary healthcare. For example, the family doctor can refer them to a physiotherapist, occupational therapist, dietician or psychologist. A family doctor who thinks along with you and keeps in touch will make all the difference. Furthermore, it is important not to go beyond someone’s limits when building up resilience, and to be honest to the patient about the fact that we do not yet know everything about this disease.’
Through interviews with patients, the researchers have recorded the effects of post-COVID on their personal lives and their experiences with healthcare. UMCG researcher Manna Alma: ‘People experience symptoms in various areas, both mentally and physically. They describe it as feeling unsettled, a disruption, dislocation, a combination of many persistent symptoms, and something that’s in your whole body. The impact on their lives is all-over and life-changing.’
Many people with post-COVID symptoms feel insecure. Alma: ‘For some of them, this is because they are still waiting for further test results or the start of a treatment. Other ones feel insecure because they cannot put their finger on what actually causes their complaints. People find it difficult that there is so little known about how their symptoms will develop and when they will recover. They often recover only very slowly and this creates a great deal of insecurity and serious concerns about their future. For many people it is hard to accept that it is impossible to say when it will be finally over.’
For people with post-COVID, the impact on their work is enormous. According to researchers Sandra Brouwer and Sander van Zon, almost one in six employees will be absent for more than one year. On average, a month of absence will cost the employer 3,285 euros per person. Moreover, the researchers found that more than 20% of patients with post-COVID symptoms will continue to work. On average, they will be 22% less productive than usual, which will cost the employer 578 euros a month on average. On top of that, these employees also carry a higher risk of dropping out. According to the researchers, this implies not only high costs for the employer, but patients are faced with major social consequences, both financially and in terms of their sense of well-being.
Almost three-quarters of post-COVID patients responded that they felt supported by their employer when they went back to work. However, any adjustments to their tasks are mainly short-term solutions; for example, they will be assigned fewer tasks or allowed to work shorter or more flexible working hours. Brouwer: ‘In the first instance, employers will mainly focus on short-term solutions. But if the complaints continue and the employee’s reduced ability to work turns out to be permanent, the employer will need to find more creative solutions to make the work suitable in the long term.’
Patients with post-COVID need more care. They will visit a physiotherapist, GP or lung specialist more often than those who have recovered from a COVID infection. For instance, they will visit their GP about five times more often, frequently use homecare services and receive informal care from family and friends. According to researcher Thea van Asselt, this pushes up their healthcare costs substantially: ‘Annually, on average, they spend EUR 1,125 per person on healthcare. This does not even include the costs of medicines. This amount is more than four times higher than that of people without COVID and double that of people who have recovered from COVID. Obviously, some patients mention that they are no longer able to pay these medical costs on top of their health insurance premium.’
The website pratenovergezondheid offers patients and their families a place where they can find the experiences of people in the same situation. The website provides recognisable and reliable information about people’s experiences with illness, health and healthcare. Both patients and informal carers give their input. It offers them contact with fellow-sufferers. As from now, the website also has a module available for experiences with post-COVID.
According to research team leader Judith Rosmalen, the study of the effects of post-COVID will be continued. ‘I hope that through research we will be able to get to know more about what causes post-COVID. For this, we have received a European subsidy to carry on with our research into the mechanisms of post-COVID.’ Another follow-up study will focus on combining new knowledge and experience into a national network and on further developing care pathways in the various regions.
You can read more here about the backgrounds to and results of the study.