Anyone who has ever been a first year in university can remember how overwhelming it can be at times: Navigating campus, taking on large course loads, making new friends, and perhaps even living away from home.
Eighteen-year-old freshmen who live with a chronic illness, like type 1 diabetes, face the struggles that come with taking on the full weight of illness management on top of these adult responsibilities—as the Quebec health system pushes them out of pediatric care into adult care.
“What ends up happening is that during this transition period, [patients] have all these other competing interests where type 1 diabetes may not be as much of a priority,” Meranda Nakhla, a pediatric endocrinologist at the McGill University Health Clinic (MUHC) and an assistant professor in McGill’s Pediatrics Department, said. “As a result, we know that attention to self-management, which is really critical for type 1 diabetes, tends to deteriorate during this time.”
Type 1 diabetes is a disease in which the beta cells of the pancreas are attacked by the immune system, resulting in little or no insulin being produced. Insulin is the hormone necessary for converting the glucose—or sugar—you eat into energy your body requires for survival, and the lack thereof poses serious health problems. Since the disease typically begins in children and young adults and has no known cure, many patients will face a lifetime of daily insulin injections and careful diet management to stay healthy.
On top of the demanding lifestyle of a typical university student, students living with a chronic condition must constantly manage and monitor their health.
The competing priorities of a growing adolescent with type 1 diabetes are important to consider when developing a system of care for these patients. However, a recent study conducted by the MUHC sheds light on the gaps in transitional care between pediatric and adult health services in Quebec. The research found that health care providers lacked understanding of this vulnerable period. Additionally, the substantial differences in the type of care received by pediatric patients compared to adult patients only compounds these stresses.
“Stereotypically, in pediatric care, we do a lot of handholding, walking [the patient] through the steps and don’t prepare them well enough for adult care,” Nakhla said. “As they enter into adult care when they turn 18, […] there’s an expectation that they’re fully autonomous and should be able to take care of all aspects of their life [….] So if you don’t show up to your appointments, then you don’t show up and no one will chase you, like we do in pediatric care. Nobody’s going to make sure that you’re getting your prescriptions.”
Of course, not only type 1 diabetics face such challenges.
“It’s an important issue for anyone [with a] childhood onset chronic disease where there needs to be some sort of transition care provided in pediatric care,” Nekhla said.
While research thus far has focused on highlighting this policy issue, attention is now targeting specific measures which could improve the experiences of patients under standardized transitional care policies in Quebec.
“Actual interventions, whether you’re doing [an] adult clinic [or] peer support group, […] need to go through more of a rigorous evaluation to see how that can affect outcomes when emerging adults get transferred to adult care,” Nekhla said. “That’s the next step in what we can do to improve the process.”