Novel programs needed to improve transition from pediatric to adult diabetes care
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A qualitative study published Diabetic Medicine highlighted the need for novel programs to improve the transition from pediatric to adult care for type 1 diabetes.
“Other mixed-method studies of post-transition emerging adults with type 1 diabetes found that many felt unprepared and dissatisfied with the transition process and noted too the lack of formal and developmentally appropriate transition care,” Jennifer M. Ladd, MD, from the Research Institute of the McGill University Health Centre and the department of pediatrics at McGill University in Montreal, and colleagues wrote. “Yet the qualitative components of these studies did not focus on those in their final year of pediatric care, leaving a gap in comprehensive understanding of the adolescent narrative just prior to the transfer to adult care.”
Researchers conducted semi-structured interviews from April 2017 to May 2018 with 61 adolescents aged 17 years (36% male) with type 1 diabetes from diverse socioeconomic backgrounds. The interviews included open- and closed-ended questions about their perceived autonomy, transition preparedness and barriers to transition from parents and medical teams. All participants were recruited from the pediatric diabetes clinic at the Montreal Children’s Hospital of the McGill University Health Centre.
The interviews revealed three prominent themes. First, adolescents were concerned about changing relationships with their parents and their health care teams. For example, some reported the desire to take on more responsibility for their own disease management, but experienced excessive supervision by parents. Also, some reported worry that adult health care teams would not be as invested in them personally as their pediatric teams.
A second theme centered on the need to increase diabetes self-management along with other responsibilities. Different comfort levels with self-management were often associated with age at diagnosis, as someone diagnosed at a younger age had more time to get used to managing the disease.
A third theme centered on the perceived responsibilities of pediatric teams and adolescents themselves for preparing for transition care, particularly dealing with diabetes-specific skills and health care system. Most participants said their care team had not informed them about what to expect when working with adult providers; those who were staying at the same care facility report more comfort with the transition. Also, participants expressed worry about the logistics of making appointments and filling prescriptions.
According to the researchers, this study with a large and diverse adolescent group highlights these concerns as paramount to those in the vulnerable peri-transfer period and should be addressed in any type 1 diabetes transition program.
“Novel transition programs addressing changing interpersonal relationships, disease-specific self-management (adapted for age of diagnosis) and more general health care system navigation, supported by parents and peers, could improve transition care in adolescents with type 1 diabetes,” the researchers wrote. “Such transition programs should be tested in future clinical trials.”
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