IDcare – a longitudinal register study of pre-pandemic and pandemic diagnostic profiles among people with intellectual disabilities: A cohort profile
IASSIDD 2024 - Chicago (USA), August 5-8 2024
Magnus Sandberg, Jimmie Kristensson, Emilie Stroh, David Edvardsson, Kristina Edvardsson, Anna Axmon
[View presentation] [Project main site]
Due to changes in the definition of the gPop cohort, the numbers below and in the presentation differ slightly from those that were provided in the book of abstracts.
Background: There are few large register-based studies on people with intellectual disabilities (ID) that compare outcomes with the general population.
Methods: All people in Skåne, the southernmost part of Sweden the 1st of January 2014 was included. Data concerning demographics/vital events, healthcare utilization and service and support for people with ID or autism spectrum disorder (ASD) was collected from registers for 2014-2021. Data on COVID-19 vaccination, palliative care and intensive care were collected from registers for 2020-2021. Those with a registered diagnosis of ID (F7), Down Syndrome (Q90), or with service and support for people with ID or ASD, comprised the ID cohort (n=14716). People living in the same household as someone in the ID cohort were excluded. The remaining comprised the general population cohort (gPop) (n=1226955). The cohorts were also divided into age groups (children: 0-12; adolescents: 13-18; Young adults: 19-24; Adults: 25-44; Lower middle-age:45-54; Upper middle-age:55-64; Older: 65-79; and Oldest old: 80 years and older).
Findings: The ID prevalence was 1.2%. Among those 77.9% had at least one measure of support for people with ID, 63.8% had at least one F7-diagnosis, and 5.8% a Q90 diagnosis. For those with F7-diagnosis 26.9% had mild, 7.4% moderate, 2.8% severe, 1.4% profound, and 25.4 other/unknown ID diagnosis. The proportion of people in the younger age groups were higher in the ID cohort compared to the gPop (children: 24 vs. 14%, adolescents: 14 vs. 6%, young adults: 16 vs. 8%, adults: 27 vs. 26%, lower middle-age: 8 vs. 13%, upper middle-age: 6 vs. 12%, older: 4 vs. 15% and oldest old: 1 vs. 6%).
Conclusions: The prevalence of ID was higher in younger age groups and in mild and other/unknown ID. A large proportion of people with ID had no registered/unknown diagnoses of ID severity during the study period.
Research group
Associate professor Magnus Sandberg (PI for IDcare)
Associate professor Anna Axmon (PI for the covid follow-up study)
Professor Ulf Gerdtham
Associate professor Jimmie Kristensson
Collaborations
Ass prof Julia Bahner, Lund University, Sweden
Dr Trine Lise Bakken, Oslo University Hospital, Norway [prevalence of schizophrenia]
Dr Petra Björne, City of Malmö, Sweden
Prof Darren Chadwick, Liverpool John Moores University, UK
Prof David Edvardsson, La Trobe University, Melbourne, Australia [dementia]
Prof Kristina Edvardsson, La Trobe University, Melbourne, Australia [pregnancy outcomes]
Dr Karin Engström, Lund University, Sweden
Dr Hanna Falk Erhag, University of Gothenburg, Sweden
Dr Alessandra Grotta, Stockholm University, Sweden
Ass prof Björn Hofvander, Lund University, Sweden
Prof Silke Kern, University of Gothenburg, Sweden
Dr Katarina Lauruschkus, Lund University, Sweden
Dr Can Liu, Stockholm University and Karolinska Institutet, Sweden
Prof Yona Lunsky, University of Toronto, Canada
Ass prof Hugo Lövheim, Umeå University, Sweden [dementia]
Dr Emilie Stroh, Lund University, Sweden [care transitioning] [diabetes]