Post-COVID has a major impact on people and society
The first year of the Multi-year Long COVID study, which Erasmus MC is conducting on behalf of C-support, has been completed. An extensive report describes the results, analyses and research method. The consequences of Long COVID (Post-COVID) on health, social participation and work are significant. Participants have an average of 18 health complaints. The majority are severely fatigued and 3 out of 4 do not work or work less and are less able to fulfil social roles. The demand for care is high, an average of 6 care providers were consulted. Improvement is needed in cooperation and coordination between care providers. The results require action and more research. The study provides starting points for further research and advice for necessary steps to improve the situation of Long COVID patients.
C-support, with its knowledge of Q fever, has recognized the importance of mapping and monitoring the long-term consequences of Long COVID at an early stage. Since C-support has the largest group of patients with long-term complaints in the Netherlands - now almost 20.000 registrations - and sees the major impact of this disease on their lives every day, research into this population is relevant. This concerns a group that has serious to very serious complaints months after the COVID-19 infection with major consequences for the quality of life, daily functioning and work. It is important to monitor how the complaints develop over time and which factors contribute to a serious course. Insight into the care received is important because it is a relatively new disease, for which healthcare providers are still looking for a suitable treatment.
Results
Participants report a wide range of complaints: they have had an average of 18 complaints since the infection, of which fatigue, concentration problems and loss of condition are the most common. In addition, 9 out of 10 participants suffer from severe fatigue and approximately 1 in 4 has a probable depression or anxiety disorder. The impact of Long COVID on quality of life is significant: the average score is 40% lower than before Long COVID and considerably lower than the general Dutch population. More than 90% experience problems with performing their social roles. Long COVID leads to reduced social and labor participation: 79% work fewer hours or are unable to work. Long COVID also has a major impact on the pursuit of studies, hobbies and social contacts.
Female gender, younger age, low education level, having a chronic condition and a shorter duration of illness are factors that are associated with more serious health problems and reduced social and labor participation in this study. For example, participants who were infected up to six months ago have more serious health problems than participants who were infected earlier.
Participants consulted an average of 6 healthcare providers for their complaints, including mainly the general practitioner, physiotherapist, company doctor and occupational therapist. They are most satisfied with the care provided by paramedical care providers and considerably less satisfied with the care provided by the general practitioner, medical specialists, company doctor and insurance doctor. Finding the right care is a problem for many participants: 5 out of 10 did not know where to go for help.
More than half need support in arranging care for their complaints. The collaboration between care providers is also an important point for improvement: only 25% indicate that care providers collaborate sufficiently.
Personal overview
To give patients insight into their own situation, a 'personal overview' developed with graphs about their health and functioning. Patients use this in conversations with care providers, employers and their direct environment, as well as in conversations with C-support. This leads to more insight and understanding and benefits the care and assistance. By participating annually, they can follow their development. There are also 'average personal overviews' so that patients can compare their results with their reference group.
Necessary next steps
Better diagnostics and thus more uniform registration will allow Long COVID patients to be better identified, which can provide many long-term insights. This also applies to the far-reaching consequences for their labor participation, such as absenteeism and loss of income, as many patients have now become incapacitated for work. More research is needed into the mechanisms of Long COVID, possible support and treatments. Since this is a new disease, for which knowledge is still developing, treatment guidelines must be kept up to date and reach healthcare providers through further training. Patients need more support in finding the right care and healthcare provider(s). Assigning a case manager and setting up an expertise center can contribute to this. Due to the great diversity of complaints and problems, an integrated approach is needed, as well as improving multidisciplinary collaboration and access to multidisciplinary rehabilitation programs in secondary care.
Scientific publications and data exchange
The researchers are working on various scientific papers. For this, they are performing in-depth analyses to gain insight into predictive factors such as the duration and severity of the course of the disease. Scientific papers will also be published on healthcare use and the personal overview.
The collected data on the patient population of C-support has proven to be very valuable in gaining more insight into the extent and nature of the various problems that patients experience. Collaboration is sought from various angles (including UWV and Centrum Werk Gezondheid) to make use of this. C-support also uses the acquired knowledge and insights for further training for various healthcare professionals and in discussions with the Ministry of Health, Welfare and Sport, in which C-support draws attention to all bottlenecks and makes suggestions for improving care, including by setting up expertise centres.
Research QVS database
In September the report on the first year of the QVS database research completed. This is a comparable study among patients with Q fever fatigue syndrome (QVS).
