Support, health care, end-of-life care, and causes of death among people with intellectual disability: Effects of the Covid-19 pandemic

Previous studies suggest that even though people with intellectual disability (ID) have higher disease burden than the general population, they experience barriers to health care.

In an ongoing study (IDcare), we are investigating differences in primary and secondary health care utilization between people with ID and the general population during 2014-2021.

The present study will use the cohorts established in IDcare and add health care data from a longer time period, as well as data on support and service aimed at people with ID, data regarding health care specific to Covid-19, and causes of death.

Thus, we will be able to assess if a) differences in health care utilization between people with ID and the general population were increased during the pandemic, b) if access to service and support decreased during the pandemic, c) if people with ID received the same Covid-19-related care as the general population, and d) if people with ID differs from the general population with respect to Covid-19-related deaths.

The study is register based, using regional and national registers to collect data on outcomes: Skåne Health care register, the LSS register, the Cause of Death register, the Swedish Intensive Care Unit register, and the Swedish National Vaccination Register.Today, there is no information specific to the group of people with ID with respect to care and support during the societal crisis that the pandemic resulted in.

Such data can be used as a measure of the readiness of the health and social care systems – how do the welfare system care for marginalized groups that cannot speak for themselves when the system itself is under extreme pressure? Which parts of the welfare systems are the first to fall?

Thus, the results from this study may be a way to summarize lessons learned for future pandemics and other events that put unforeseen demands on the health and social care systems in Sweden.