Health care utilization in primary and specialist care among people with intellectual disability

A longitudinal register study (IDcare)

Abstract

According to Swedish law, one of the health care aims is equal treatment for the entire population. People with intellectual disability (ID) constitute a vulnerable group as they are at high risk for a number of health problems while at the same time they may have difficulties communicating their needs to health care professionals. It is therefore of importance to ensure that health care is adapted to their specific needs in order to achieve the aim of health care on equal terms.

In previous studies based on Swedish register data, we found that middle-aged and elderly people with ID had less health care utilization than their age peers in the general population. In these studies, however, we only investigated inpatient and outpatient specialist care. Therefore, it cannot be ruled out that a possible explanation for the discrepancy could be that people with ID had higher use of primary care.

In Sweden, there is no national register containing information on primary care visits. However, Region Skåne maintains a regional database (Skåne Health Care Register) containing information about primary care as well as specialist and hospital care. Unlike the National Patient Register, this regional database also contains information regarding visits to private health care providers.

We will use data from the Skåne Health Care Register, together with data from the LSS register, the register containing information about people receiving support under the LSS Act, to identify people with ID in Skåne. The remaining part of Skåne's population will be used as a reference group. For both groups, we will collect data on health care utilization from the Region Skåne database. Based on these data, we will be able to study whether people with ID receive as much and the same type of health care as the general population provided that they have the same diagnosis.

Covid follow-up study

In 2021, we extended the project to include also effects of the pandemic on health care in people with ID. Separate funding was obtained for this sub-project, which is titled "Support, health care, end-of-life care, and causes of death among people with intellectual disability: Effects of the Covid-19 pandemic".

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

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)

Funding

This project is funded by FORTE (2019-00105 and 2021-01862).

Results

Covid-19 among people with intellectual disability (presented at NordicEPI 2022)
Diagnoses of schizophrenia, schizotypal and delusional disorders among people with intellectual disabilities compared to the general population: A register study in Skåne, in southern Sweden (presented at EAMHID 2023)
Prevalence of dementias in a Swedish cohort of people with intellectual disability (n=6 699) compared the general population (n=888 317) – a registry-based study (to be presented at NKG 2024)
Healthcare use in older people with intellectual disabilities compared to the general population – A Swedish register study before and during COVID-19 (to be presented at NKG 2024)
IDcare – a longitudinal register study of pre-pandemic and pandemic diagnostic profiles among people with intellectual disabilities: A cohort profile (to be presented at IASSIDD 2024)
Covid-19 diagnoses and vaccinations among people with intellectual disabilities compared to the general population (to be presented at IASSIDD 2024)
Diagnostic patterns among people with intellectual disabilities compared to the general population (to be presented at IASSIDD 2024)
Pregnancy outcomes in women with intellectual disability. A cohort study using linked Swedish population-based registers (to be presented at IASSIDD 2024)