Expanding transitional support for young adults with diabetes

Study shows success of transition coordinator and need for continued intervention

In 2012, researchers from across Ontario, led by a team at Lawson Health Research Institute, started the first multicenter randomized controlled trial to evaluate implementation of a transition coordinator for young adults with type 1 diabetes as they transferred from paediatric to adult care.

“There is a huge difference between the kind of care that they receive as children compared to adults, and that is consistent across Canada and most other countries,” explains Dr. Cheril Clarson, associate scientist at Children’s Health Research Institute, a program of Lawson, and a paediatric endocrinologist at Children’s Hospital, London Health Sciences Centre.

With children, patient visits involve a variety of specialists from different areas, such as the physician, nurse educator, dietitian and social worker. “The naturally build up a long-term relationship with the team, as some children might start the program when they are 2 or 3 years old as an example.” Dr. Clarson adds that the child’s caregivers are an integral part of the process and the care team also gets to know them very well.

Moving into the adult program means that the patient now has more responsibility and autonomy over their own care. They have to remember to go to appointments, fill prescriptions and maintain their daily diabetes care.

“During the emerging adulthood period, your attention is taken up by many other things – leaving home, starting post-secondary education, figuring out your identity and independence,” says Dr. Tamara Spaic, Lawson associate scientist and adult endocrinologist at St. Joseph’s Health Care London. “And on top of that they need to manage their diabetes every day. They are in a completely new system with a new care team – it’s a major transition. For many, they stop coming to appointments regularly and they don’t keep up with all of their own care.”

As young adults struggle to find their footing in a new system, there are significant short and long-term consequences when it comes to their health. Some will experience acute complications like high sugars leading to diabetic ketoacidosis and hospital admission or severe low blood sugars where they can lose consciousness and have a seizure.

“Different studies show between 30 to 60 per cent increased risk of complications like retinopathy, myocardial infraction, stroke and kidney disease in those who do not follow their care plan,” notes Dr. Spaic. “We see a bump in this young adult period where levels spike and their diabetes isn’t being controlled – this has impacts for both the individual and the system.”

The study enrolled 205 young adults with type 1 diabetes between the ages of 17 and 20. Patients were recruited from three paediatric centres and their care was transitioned to three adult centres. The multi-centre partnership included Children’s Hospital; St. Joseph’s; Children’s Hospital of Eastern Ontario; The Ottawa Hospital; and, Trillium Health Partners in Mississauga.

Participants were randomly assigned to two groups, with 104 patients in the structured transition program and 101 patients receiving standard care. Patients were seen in the paediatric care setting for six months and then transferred to adult care, where they continued with either the transition program or standard care for one year.

The core component of the program was a transition coordinator, a nurse who is a certified diabetes educator. The coordinator followed the young adults throughout the transition, interacting with the paediatric health care team to establish a base of support as they moved into adult care. They attended visits, established appropriate contacts for the patient, provided support for diabetic care, problem solved and helped navigate the system. In addition to face-to-face meetings, they were available via text messages, emails and phones calls.

“We had a high recruitment rate for the population and type of study, and a high number of participants followed the full program,” says Dr. Clarson. “Our results at the end of the intervention showed that the program worked very well. By providing additional support through a transitional coordinator, the results showed better outcomes all around.”

Compared to the baseline, study participants attended more care visits, were more satisfied with their care, suffered much less distress associated with diabetes, had better management on a daily basis and reported less emotional burden of diabetes.

The team then took it a step further and spent another year following the participants to see if they were able to sustain the behaviour and positive outcomes. They did not find a difference between the control and intervention groups.

“Unfortunately, we found no difference in the number of visits they attended, their satisfaction with care and management of their diabetes,” explains Dr. Spaic. “When they didn’t have the intervention, they essentially went back to baseline. Out hope is to see the program extended.”

Dr. Clarson adds that they developed the program so that it can be integrated in different ways, and also in difference areas of health care beyond diabetes. For example, they found that the preferred method of communication with the coordinator was text. This is an easy way to provide the fundamental support of a coordinator for longer, and it is cost-effective.

“Our patients really loved the intervention. By the end of the study, they felt more comfortable being able to navigate the adult health care system. They felt empowered and responded well. They wanted to continue the program.” The next step for the researchers is to evaluate support through a virtual transition coordinator.

Closing the Gap: Results of the Multicenter Canadian Randomized Controlled Trial of Structured Transition in Young Adults With Type 1 Diabetes” was published in the journal Diabetes Care by the American Diabetes Association.

Learn more about the study and read about Nicole Pelcz, study participant, who found out at 13 years old that she had type 1 diabetes.