Duration: Oct 2021 - 2022
Long COVID: gaining insight into the long term complaints after COVID-19 and the 'care pathways' of patients with Long COVID. A mixed methods research.
Project Long COVID • 2021-2022
Duration: Oct 2021 - 2022
A number of people that have experienced corona infection keep or develop longer-term symptoms. This is called Long COVID. Little is known about it. In order to minimize the negative consequences for patients who suffered from COVID-19, also in the long term, it’s essential to gain insights into these consequences. In order to do so, we conduct a large-scale research, using various research methods and various healthcare data derived from different resources: a mixed methods approach.
Large-scale, joint research project
Starting in October 2021, Nivel collaborates with three Dutch universities - UMCG (University of Groningen), Radboud UMC (University of Nijmegen), Maastricht UMC (University of Maastricht) - and with DHD (foundation of Dutch Hospital Data) to conduct research on persistent symptoms after a COVID-19 infection (Long COVID). Extra attention will be paid to various vulnerable patient groups: individuals with low health literacy, individuals with low socioeconomic status, individuals with a migration background, individuals with chronic conditions, young children, elderly people and pregnant women.
The study will provide more insight into the Long COVID disease:
- the nature, scale, severity and duration of the symptoms of persistent COVID-19 symptoms
- the possible underlying causes of Long COVID
- the risk factors for developing Long COVID
In addition, the 'care pathways' of patients with Long COVID will be mapped out:
- the associated pathophysiology
- the provided recovery and aftercare
- how this is experienced by the patient
Mixed methods approach
Quantitative and qualitative research methods are combined. We make use of various methods, data and other sources of information.
1. The Composite EHR Cohort
based on various Electronic Health Records (EHR's)
Anonymized data derived from Electronic Health Records (EHR's) of (1) general practitioners, (2) out-of-hours general practices and (3) hospitals are linked and analyzed and monitored. This concerns a total of 1.7 million individuals, of whom about 140,000 are expected to be (or have been) infected with the COVID-19 virus. How many individuals have persistent complaints (Long COVID) is subject of our research. The data are extracted from three databases:
- electronic health records (EHR) from general practitioners (GP) and GP out-of-hours-services. Source: Nivel Primary Care Database and the Academic GP-networks around Maastricht, Nijmegen and Groningen
- hospital data. Source: Landelijke Basisregistratie Ziekenhuiszorg, LBZ
- socioeconomic and demographic data. Source: Statistics Netherlands, CBS
2. The Nivel Corona Cohort
based on a various Electronic Health Records (EHR's) and PROMS
The Nivel Corona Cohort is an EHR-PROMS based cohort: we analyze the data of 250 individuals diagnosed with COVID-19. These data are collected within an adjacent Nivel research project called 'Effects of COVID-19: research with the Nivel Corona Cohort' (in Dutch only). In this research project, these 250 COVID-19 patients, among them also vulnerable individuals, are followed regarding their treatment and their experiences with the care given and with the aspect of quality of life. Questionnaire research is combined with a patient's healthcare data from his EPD of the general practitioner. Symptoms and care experiences are available through Patient Reported Outcomes Measures (PROMs), in combination with EHR data.
3. Interviews with patients and care providers
We conduct interviews with patients and care providers. The interviews are done with 6 to 20 different COVID-19 patients, all participants in the Nivel Corona Cohort. This group includes vulnerable patients, such as patients with low health literacy. Furthermore a number of 8 to 10 GPs will be interviewed to identify points of attention in giving care to vulnerable patient groups.
Notice: Allied healthcare is not part of this project as this is investigated in another Nivel-study (in Dutch).
All results of this project you will find as publications on the right, along with other relevant information on the project.
The outcomes of this study will provide new scientific evidence for clinicians and patients for early detection of patients with Long COVID and provision of optimal care.
Results will be shared nationally and internationally. A patient panel and an advisory committee with representatives of relevant stakeholders will provide advice on the project.
Nivel researchers involved in the project are:
- Robert Verheij, coordinator research program Learning Health System
- Isabelle Bos, senior researcher Learning Health System
- Liset van Dijk, coordinator research program Pharmaceutical Care
- Karin Hek, senior researcher Pharmaceutical Care
In the research project Nivel participates with three universities - UMCG (University of Groningen), Radboud UMC (University of Nijmegen) and Maastricht UMC (University of Maastricht) and with DHD (foundation Dutch Hospital Data).
The project is funded by ZonMw and is one of the projects within the ZonMw COVID-19 programme. In coordinating this programme, ZonMw contributes to combating the COVID-19 pandemic and to preventing or reducing the negative effects of the corona measures. Together with their partners, they create insight into the (global) social dynamics during and after these and comparable, far-reaching health crises such as the COVID-19 pandemic.