What is the problem?
Annual health checks are important when it comes to adults with developmental disabilities (DD). They enable doctors to detect diseases that were not previously recognized. They also help ensure health promotion and prevention. Past research by the H-CARDD Program, however, shows that few adults with DD have an annual health check. H-CARDD's partners have been working to address this situation. Since 2006, they have developed guidelines, tools, and training to support primary health care providers in giving checks. But these efforts have yet to be evaluated at the provincial level. Moreover, they did not target adults with DD directly but instead rely on clinicians to provide guideline-recommended care.
Those with DD and their caregivers need to be engaged in processes aimed at changing their behaviour and promoting their health.
How is H-CARDD helping?
To supplement the earlier work of its partners, the H-CARDD Program reached out to a large segment of Ontarians with DD and informed them of the need for an annual health check, with practical suggestions about how to make it happen. This public health intervention provided an opportunity to empower about 40,000 adults with DD and their caregivers, across the province, to take action and make appointments for annual health checks.
H-CARDD researchers interviewed a subset of individuals with DD and/or their caregivers about the package they received through the mail. They also looked at health administrative data to describe trends in the annual health check among adults with DD over time. The research had two goals:
Gain information on the experiences and opinions of adults with DD regarding the annual health check: We found that caregivers play a crucial role in conveying health-related information to individuals with DD. Less than a third of adults with DD read the information package themselves. Promoting the annual health check to adults with DD and their caregivers remains somewhat of a challenge. Although many adults with DD and their caregivers viewed the annual health check as important, some individuals (20%) who are perceived to be healthy or already visit the doctor regularly do not recognize the importance of attending the annual health check for the purpose of preventive health care.
We also learned that adults with DD expect their doctors to respect and respond to their individual needs and preferences; physicians may do this by ensuring adults with developmental disabilities have sufficient support to schedule the appointment, have the resources to attend, have sufficient time during appointments to communicate health concerns, have a good understanding of what is happening during the exam and of any recommendations, and by collaborating with caregivers in instances where additional support would be beneficial. In the absence of patient-centered care, some will not attend the annual health check.
Increase the rates of annual health checks among adults with DD through a province-wide patient and caregiver-oriented health communication intervention
The H-CARDD Program is in keeping with the Canadian Consensus Guidelines for the Primary Care of Adults with Developmental Disabilities.
For more information, please contact:
Hélène Ouellette-Kuntz, PhD, BScN
Professor, Department of Public Health Sciences, Queen’s University
Phone: 613 548 4417
Virginie Cobigo, C. Psych. PhD
Associate Professor, School of Psychology, University of Ottawa
Phone: 613 562 5800 ext. 7753
Summary of Research Findings
- Booking and attending annual health exams: The perspective of adults with intellectual and developmental disabilities
- Importance of and intention to book the annual health exam: The perspective of adults with intellectual and developmental disabilities
- Importance of and intention to book the annual health exam: The perspective of caregivers for adults with intellectual and developmental disabilities
- Supports needs of adults with intellectual and developmental disabilities when attending annual health exams
Annual Health Check Information Package