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
Looking at physician billing data for the province, we found that over time, fewer adults in Ontario (with and without DD) received recommended preventive care through primary care.
While there was a small increase early on (between 2003 and 2011), we saw a drop in the next 5 years (to 2016). This is in-line with the policy change introduced in 2013, advising physicians not to perform annual health assessments for healthy adults.
The pattern of uptake of preventive care through primary care is different for men and women.
Women with DD have consistently lower uptake of preventive care than women without DD but men with DD have very similar uptake to men without DD in the earlier years (2003-2007) and better uptake starting in 2008 (up to 2015).
After we mailed information about the importance of the annual health check and how to make an appointment to a sample of adults with DD, we learned that some individuals and their families or caregivers found it helpful but others felt they were already seeing their doctor as needed.
Some who did make an appointment told us they need reminders and support to schedule and attend their appointment.
The experience during the appointment varied; some commented on the importance of being familiar with one's doctor; others reported feeling hurried during their appointment.
We looked at physician billing data again to see if those who received our mailed information were more likely to receive preventive care through primary care after they received it. It appears that mailing the information contributed to a small improvement in uptake for men only. For women, there was no change.
We expect that without dedicated efforts to promote uptake among adults with DD, even fewer adults with DD would have received such care since the policy change in 2013.
For more information, please contact:
Hélène Ouellette-Kuntz, PhD, BScN
Professor, Department of Public Health Sciences, Queen’s University
Phone: 613 548 4417
Email: Helene.kuntz@queensu.ca
Virginie Cobigo, C. Psych. PhD
Associate Professor, School of Psychology, University of Ottawa
Phone: 613 562 5800 ext. 7753
Email: virginie.cobigo@uottawa.ca.
