Heart health for people with intellectual disability – seldom forgotten or overlooked?

Short summary:
The aim pf this project is to put heart health for people with intellectual disabilities on the agenda by providing new knowledge about metabolic health and physical activity level.

Background:
Intellectual disability (ID) occurs in about 2-3% of the general population and is associated with inequalities in health. People with ID have approximately 20 years shorter life expectancy and a higher prevalence of co-morbidities than the general population. Even though poorer health may partly be explained by their genetic or metabolic disorders, it is also affected by unhealthy lifestyle and living environment and a lack of timely access to effective healthcare and preventive actions. Research suggests that people with intellectual disabilities are at a higher risk for cardiovascular disease than the general population.

Objectives of the study:
The overall aim of this project has been to put heart health for people with intellectual disability on the agenda by providing new knowledge about the challenges of testing metabolic health and physical activity level, as well as gaining better insight into existing barriers to assessment and treatment for developmentally disabled people.

The project's specific objectives were (1) to test routines for mapping metabolic heart health in people with varying degrees of developmental disabilities (2) to test the feasibility of using an objective method to measure physical activity levels and (3) to map the barriers to prevention, investigation and treatment of heart/vascular disorders for people with developmental disabilities.

We have tested feasibility to take blood samples, measure blood pressure, weight/height, waist-hip circumference, electrocardiogram (ECG), 6-minute walk test and an objective method to measure physical activity level (Axivity) in a heterogeneous sample of people (n= 69 with intellectual disabilities. In addition, we have conducted individual interviews with relatives and general practitioners and had focus group interviews with staff working at an assisted home facility, a cardiac ward, an obesity clinic and two rehabilitation centers (n=33) in Norway.

Time frame:
2020 – 2023

Status of the project:
Data collection was ended in October 2023. One paper with results from the interviews is submitted and under review in the Journal of Applied Research in Intellectual Disabilities. Another paper with results from the feasibility part of testing heart health is under preparation and we expect to submit the paper in April 2024.

Project group:
Line Oldervoll, Professor at Centre for Crisis psychology, UiB, Bergen and The National Institute on Intellectual Disability and Community, Norwegian University of Science and Technology, Trondheim

Ellen Margrete Iveland Ersfjord, Postdoctor at Centre for e-health, University of Agder and researcher at Centre for obesity research, Department of Surgery, St. Olavs Hospital, Trondheim

Tanja Plasil, Senior researcher at NTNU Social Research, Norwegian University of Science and Technology, Trondheim Norway and researcher at the Centre for obesity research and innovation, Department of Surgery, St. Olavs Hospital

Kim Berge, Associate Professor, The National Institute on Intellectual Disability and Community, Faculty of Medicine and Health Sciences, Department of Mental Health, Trondheim

Marianne Nordstrøm, Clinical dietitian and senior researcher, Frambu Resource Centre for Rare Disorders, University of Oslo.

The project is funded by the DAM foundation