What you need to know:
The Health Care Access Research and Developmental Disabilities (H-CARDD) Program's resource, The Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario offers for the first time a picture of the health and health care of adults with developmental disabilities in the province.
What is the research about?
Individuals with developmental disabilities are a vulnerable population. Research shows that they have higher rates of preventable diseases. They also face greater challenges getting primary care, and higher health care costs.
And yet, when it comes to health care, adults with developmental disabilities haven't been well studied in Ontario. This is because there's a lack of data about this population. However, the H-CARDD Program is working to change all of that.
What did the researchers do?
Led by Dr. Yona Lunsky, the H-CARDD Program developed a key resource to address the lack of data. The Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario, published by the Institute for Clinical Evaluative Sciences and the Centre for Addiction and Mental Health, describes, for the first time, the health and healthcare of individuals with developmental disabilities. It also examines the quality and consistency of their primary care, compared to those without developmental disabilities.
What did the researchers find?
The number of adults (aged 18 to 64) with developmental disabilities in Ontario was 66,484 in 2009-2010, or 7.8 out of 1000 people. This prevalence estimate is somewhat higher than expected, based on previous reports.
Adults with developmental disabilities were just as likely as those without developmental disabilities to see a family physician but they were less likely to have common prevention checks, like screening for cancer.
These adults tended to be younger and a greater proportion were male than adults without developmental disabilities. They were more likely to live in poorer neighbourhoods and in rural areas than other adults. They had higher rates of morbidity and were more likely to be diagnosed with a range of chronic diseases.
Adults with developmental disabilities were just as likely as those without developmental disabilities to see a family physician but they were less likely to have common prevention checks, like screening for cancer.
When they were ill, how their health problems were managed varied. Some of their care, like getting eye exams for diabetes, was better than it was for adults without developmental disabilities. Yet other types of care were worse, such as follow-up after breaking a bone. Generally, they were more likely to get hospitalized for health issues that should be able to be managed in the community.
Adults with developmental disabilities were taking many medications, with the most commonly prescribed medications being ones for mental health or behaviour problems. Some medication combinations were quite dangerous. One third of adults on multiple medications didn't get appropriate follow up from their family physician.
How can you use this research?
There needs to be coordination and continuity between different health providers and between the hospital and community. Finally, patients and caregivers should be viewed as partners in care. They aren't passive recipients; they need to be empowered, educated, and supported.
Primary care providers need to take a balanced, comprehensive approach with their patients with developmental disabilities, focusing on prevention and management of disease.
About the research:
H-CARDD's partners in the creation of The Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario include the Ontario Ministry of Community and Social Services, the Ontario Ministry of Health and Long- Term Care, Surrey Place Centre, the University of Ontario Institute of Technology, the University of Ottawa and Queen's University, the Institute for Clinical Evaluative Sciences and the Centre for Addiction and Mental Health.
About H-CARDD:
Health Care Access Research and Developmental Disabilities (H-CARDD) is a research program whose primary goal is to enhance the overall health and well-being of people with developmental disabilities through improved health care policy and services. H-CARDD research is conducted by dedicated teams of scientists, policymakers, and health care providers. H‐CARDD is funded by the Partnerships for Health System Improvement Program of the Canadian Institutes of Health Research and the Health Systems Research Fund of the Ministry of Health and Long-Term Care.
The H-CARDD Snapshot is a modified version of the Research Snapshot template, developed by the Knowledge Mobilization Unit at York University.
This research summary was written by Dr. Yona Lunsky for the Health Care Access Research and Developmental Disabilities program. This research snapshot, along with other snapshots, can be found at https://www.porticonetwork.ca/web/hcardd
Reproduced with the permission of Dr. Yona Lunsky (Health Care Access Research and Developmental Disabilities). This information appeared originally on the Health Care Access Research and Developmental Disabilities website (https://www.porticonetwork.ca/web/hcardd).
Photo by Daryan Shamkhali on Unsplash
