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Primary care utilization among children with intellectual disabilities transitioning into adulthood

NordicEPI 2024 – Copenhagen, June 12-14 2024

Emilie Stroh, Jimmie Kristensson, Magnus Sandberg, Anna Axmon

[View poster] [Project main site]

Background: One of the most profound transitions in healthcare trajectories is when a person turns 18 years old and transfers from child to adult healthcare.

Methods: We included all children and adolescents living in Skåne in 2014 and turning 18 years old during the study period. The ID cohort (n=2 072) comprised those with diagnosis of ID and/or service and support for people with ID, and the general population (gPop) cohort the remaining 73 681 children and adolescents. Information on all healthcare contacts to physicians in public and privately organized primary care during the study period was collected from the Skåne Healthcare Register. For each person, the yearly number of healthcare contacts was calculated and related to the year when the person turned 18 years old.

Results: Prior to turning 18, 44-46% of the ID cohort and 44-50% of the gPop cohort had at least one yearly contact with primary care (RR 0.94-1.02, all non-significant). The year of turning 18, the number of people with at least one contact rose to 63% in the ID cohort, whereas it remained at 52% in the gPop cohort. After turning 18, the number with at least one contact decreased from 56% to 24% in the ID cohort and from 42% to 15% in the gPop cohort (RR 1.47-1.88, all significant). 

Conclusions: The results show a change in healthcare utilization patterns after becoming of age. This implies a need for more in-depth research concerning the underlying mechanisms for transition into adult healthcare.

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


Dr Trine Lise Bakken, Head of Research at Oslo University Hospital, Norway (studies on schizophrenia, schizotypal and delusional disorders)

Professor David Edvardsson, La Trobe University, Melbourne, Australia (studies on ageing)

Associate professor Kristina Edvardsson, La Trobe University, Melbourne, Australia (studies on pregnancy)

Dr Katarina Lauruschkus, Child and Family Health, Department of Health Sciences, Lund University (studies on habilitation)

Dr Emilie Stroh, Occupational and Environmental Medicine, Lund University (studies on children and adolescents)