New app helps family doctors care for adults with intellectual and developmental disabilities

U of A specialist identified gaps in care as patients age, developed app on his own time to “make a difference.”


Kyle Sue, a family doctor and clinical assistant professor of developmental pediatrics at the U of A, developed a free app to help family physicians provide the best treatment for adults with intellectual and developmental disabilities. (Photo: Supplied)

A University of Alberta family doctor has made an app that he hopes will improve medical care for adults with intellectual and developmental disabilities.

Kyle Sue, clinical assistant professor of developmental pediatrics in the Faculty of Medicine & Dentistry, built the app with the help of a friend to present family physicians with the best treatment options in an easy-to-use format.

People with developmental disabilities often get excellent care from pediatric specialists when they are young, Sue said, but the family doctors who care for them as adults may be less familiar with their needs.

“I’m hoping it will help bridge the gap between pediatric and adult care for these patients,” Sue said. “Just because they’re above 18 doesn't mean they deserve worse care.”

Between four and eight per cent of adults have an intellectual or developmental disability such as Down syndrome, brain injury, fetal alcohol spectrum disorder and autism spectrum disorder. 

Sue said they receive less screening for common adult diseases than other adults and 30 per cent die from preventable causes unrelated to their underlying health condition.

“For example, some doctors don't think to ask someone with Down syndrome whether they’ve been sexually active, so they forgo Pap smear screening (for cervical cancer),” he said.

“In the past a lot of these patients wouldn’t live into adulthood because medicine just hadn't advanced that far yet,” Sue pointed out, “or they would be institutionalized and looked after by institutional doctors.”

Since the 1980s, the move toward deinstitutionalization has meant “an influx of patients into the community with issues that family physicians just weren’t trained to manage.”

This gap has been addressed with improved training in medical schools and the 2018 Canadian Consensus Guidelines for Primary Care of Adults with Developmental Disabilities, which Sue helped write, covering a range of primary care topics from mental health to medical screening, housing and aging. 

“The problem was the guidelines were only published in an academic journal, which was not very accessible to the general physician who is out in the community,” Sue said.

“With an app on your phone or tablet, when you encounter a patient who has a developmental disability, you can just open it right there in the office, use the search function to ask your question and the guidance will pop up,” he said. 

Sue stressed one of the key ways for doctors to improve care for patients with developmental disabilities is to focus on clear communication, using short phrases and simple language.

“Communication might take longer with patients who are slower to process information, and you might have to use more than one strategy,” he said. “Just the time involved can be a barrier to good care.” 

“It's not that physicians are trying to be bad, it’s just really hard to be good at something that you don’t have enough exposure to,” Sue said. “You don't know what you don’t know.”

The Developmental Disabilities Primary Care Guidelines app is available free through the Google and Apple stores.

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