IDcare – a longitudinal register study of pre-pandemic and pandemic health care utilization and diagnostic profiles among people with intellectual disabilities in southern Sweden

Abstract

The aim of the creation of this cohort was to investigate patterns of health and health care utilisation before and during the COVID-19 pandemic, overall and in relation to specific diagnoses, among people with intellectual disabilities (ID) compared to the general population. People living in Skåne, the southernmost region of Sweden, on 1st of January 2014 with at least one diagnosis of ID (ICD-10 codes F70-F79) or Down syndrome (DS; Q90), or support and/or services according to the LSS act comprised the ID cohort (n = 14 716). People living in the same family and/or household as a person in the ID cohort constituted the ID family cohort (n = 31 688), and those remaining comprised the general population cohort (gPop; n = 1 226 955). Data has been collected for all three cohorts from several national and regional registers. These include registers for health care (2014–2021), deaths (2014–2021), COVID-19-related health care (vaccinations, intensive care, palliative care, 2020–2021). The prevalence of ID was 1.2%. In the ID cohort, 77.9% had at least one measure of support, 5.8% at least one Q90-diagnosis and 63.8% had at least one F7-diagnosis (26.9% mild (F70), 7.4% moderate (F71), 2.8% severe (F72), 1.4% profound (F73), and 25.4% other/unknown (F78/F79)). Compared to the gPop there were more people in the younger age groups in the ID cohort. At this point, no additional collection of data will be carried out. However, there is a possibility to add data from the registers to include years after 2021 or from additional registers. Future publications will explore relevant research questions and report key findings in relation to health among people with ID. Future results will be used to inform policy and practice on people with ID.