The prevalence of both Type 1 and Type 2 diabetes is increasing in young people. In Alberta, it is estimated that Type 1 and Type 2 diabetes in children and adolescents have increased by 30 per cent in the last 10 years.
The transition from teenager to adult is a challenging and vulnerable time for anyone, due to the stressful changes that naturally occur with growing up. For teens with diabetes transitioning from paediatric to adult care, the increase in responsibilities can be overwhelming.
Shannon King, the mother of 18-year-old Sierra Nelson, who was diagnosed with Type 1 diabetes at age seven, knows how difficult the transition from paediatric to adult care can be. King has watched her daughter increasingly take on responsibility for managing her diabetes and says it can be exhausting and isolating.
“Children with diabetes are managed very well by their parents and medical team. Others are responsible for your diet, your blood work, your insulin intake and making sure your diabetes is controlled,” says King. “Sierra is learning to manage a lot of this on her own, but it’s relentless. Diabetes never gives you a break.”
Transition is too abrupt for many
Andrei Sabin Nastase, 27, who was diagnosed with Type 1 diabetes when he was eight, agrees, noting the transition is too abrupt for many.
“Although my transition had its challenges, it was relatively smooth thanks to my strong support network. The vast majority of people with diabetes have a more difficult transition into adult care,” he says.
“Navigating the adult health care system after the hands-on atmosphere of paediatric care is quite a shock.”
Nastase, a student in the CSM’s Leaders in Medicine program, says some people struggle to mesh with their new care team, find resources, make appointments and more. It also happens at a time in life where many other changes are occurring like leaving home, moving and starting new jobs.
“As a result, many fall through the cracks, and the consequences can be quite serious,” says Nastase.
Consequences can be severe
These consequences include both acute and long-term health issues. Nastase explains that if blood sugars go too low or too high, it can lead to numerous symptoms, like headaches, mood swings, lethargy and even death. If blood sugars aren’t managed over the long term, organ and nerve damage can occur.
In Canada, studies show that many teens with diabetes stop seeking care during this vulnerable time. According to Dr. Sonia Butalia, MD, a diabetes specialist and associate professor in the Department of Medicine at the Cumming School of Medicine (CSM), there can be serious consequences.
“We know that about 50 per cent of these youth drop out of care at age 18, and this results in an increase in diabetes complications,” she says.
In 2013, Butalia, who co-leads a diabetes transition project alongside Dr. Daniele Pacaud, MD, a paediatric endocrinologist, set out to address this gap and improve continuity of care for youth with diabetes.
The research team spoke with teenagers and young adults with diabetes, their families, and doctors and nurses involved in their care to get a better sense of how to serve teenagers’ needs. They then developed a program for transition. The program involves a transition co-ordinator who connects with teens using digital technologies such as emailing and texting, and encourages them to use a private Facebook page and special website.
A pilot study of the program, which 200 teenagers ages 17 to 18 used, was very successful, with clinic attendance increasing four-fold and a decrease in the number of teenagers with poorly controlled blood sugars. The team recently received a Canadian Institutes of Health Research (CIHR) and Juvenile Diabetes Research Foundation of Canada grant with a combined value of $1 million to implement the program across Alberta.
Transition co-ordinator critical for success
King, who consulted with researchers on the project, says the transition co-ordinator role is critical for the success of the fledgling adults who are taking over their own diabetes care.
“Managing diabetes is a full-time job that never gives you a break, and these young adults have to do it on top of all the other new responsibilities they are taking on,” says King. “It’s easy to feel isolated and overwhelmed. Having someone help navigate these young adults through the care system, provide information about resources, and support them as they take over responsibility for managing their diabetes makes all the difference.”
Butalia says the project involves collaboration from the CSM’s departments of Paediatrics and Medicine, as well as allied health professionals from Alberta Health Services and patient partners and consultants, including both King and Nastase.
“It’s an amazing team, and we are so excited,” says Butalia. “This is a low-cost program with technology that is accessible by teens in both urban and rural settings. The potential for health improvement as these teens learn to better manage their transition from pediatric to adult care and as they age is vast.”
This stage of the research will continue for four years, and researchers will access the success of the scaled-up version of this project; how to best support the program in five sites; and whether the program results in cost savings to Alberta’s health system. The results will be shared with other communities across Canada with the goal of improving health for youth across the country.