COVID-19 registration in people with intellectual disabilities in Dutch long-term care facilities

Presenter: Monique Koks-Leensen (Radboud university medical center)

Abstract for: International workshop on COVID-19 and Long-Term Care systems: What have we learnt and what policies do we need to strengthen LTC systems?

Video of the presentation:

Monique Koks-Leensen: LTC-COVID Webinar 6 – 7 December 2021


Background: People with intellectual disabilities (ID) may be at increased risk for COVID-19 infection. However, data on the incidence and development of Covid-19 among people with ID are scarce and it is unknown to what extent general population data applies to people with ID. Our registration database aims to provide insight into the impact of COVID-19 on people with ID, in Dutch long term care facilities.

Method: From March 24, 2020, until June 1, 2021, a multicenter online registration database was made available to long term ID-care organizations in the Netherlands. Organizations registered data of their patients with either suspected or confirmed COVID-19 infection, regarding sociodemographics, medical history and COVID-19 infection characteristics.

Results: ID-care organizations of over 60% of clients with ID participated. The database covers 9261 patients with (suspected) Covid-19 infection, of which 2599 had a confirmed COVID-19 infection. Case fatality rate was 3-4 times higher among people with ID compared to the general population, and mortality was already higher in younger age groups of 40 years and older.

Conclusion: According to our findings people with ID were disproportionately affected by the pandemic and were at increased mortality risk from relatively young age onwards. Our results inform policy makers and care providers on specific risks and consequences of the COVID-19 pandemic in this special population, which in the light of the current onset of a new COVID-19 wave across the European continent is an urgent and essential addition to general population findings.


Monique Koks-Leensen

Bianca Schalk

Esther Bakker-van Gijssel

Maarten Cuypers

Milou van den Bemd

Masha Nägele

Jenneken Naaldenberg

Geraline Leusink

Affiliation of all authors:

Radboud Institute for Health Sciences, Department of Primary and Community Care, Radboud university medical center, Nijmegen, The Netherlands

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