For children with type 1 diabetes, a routine of care develops early and a relationship between child, patient and doctor builds over time. But what happens as these children age and transition from pediatric to adult care? Does anything get lost in the shuffle?
To explore this transition period, a team of researchers aimed to learn more about the concerns and experiences of diabetic youth as they moved from childhood care to adult care.
The researchers found that post-transition young adults had largely positive feelings about their adult care, but somewhat negative feelings about the transition period. The authors of the study recommended standardized transition programs and transition-oriented clinics to make this shift a little smoother for young patients.
In type 1 diabetes, the body does not produce insulin - which leads to high blood glucose (sugar) levels. This condition is often diagnosed in children and young adults, requiring early and on-going treatment. Challenges can develop as these patients transition from pediatric care to adult care.
"Challenges can include reluctance to end a trusting relationship with the pediatric team, worries about 'starting over' with a new provider, and discomfort with the unfamiliar adult medical setting (e.g., shorter visits, less emphasis on multidisciplinary care)," said the researchers, led by Marisa E. Hilliard, PhD, of the Johns Hopkins University School of Medicine in Baltimore, Maryland. "Thus, it is not surprising that clinic attendance decreases and many young people with type 1 diabetes are lost to follow-up between leaving pediatric care and initiating adult care."
To examine this topic, Dr. Hilliard and her team focused on 20 pre-transition adolescents and 59 post-transition young adults, all of whom had type 1 diabetes. The pre-transition adolescents ranged in age from 15 to 17 with an average age of 16.1 years. The post-transition young adults ranged in age from 18 to 22 with an average age of 21.1 years.
Participants filled out questionnaires and answered open-ended questions regarding issues like self-management, expectations and experiences with both pediatric and adult health care providers. Pre-transition adolescents also completed the Self-Efficacy for Diabetes Self-Management (SEDM) measure, in which they rated how certain they felt about being able to properly handle diabetes management tasks, like adjusting insulin levels when eating more or less than their usual amount.
Results showed that the majority of pre-transition participants had not discussed the transfer of care with either their parents or their doctors. This group's average SEDM score was 85.4 out of 100 possible points, which the authors of the study regarded as "relatively high."
In the post-transition group, Dr. Hilliard and team found "generally high ratings of supportive interactions with current adult diabetes care providers and low to moderate negative feelings about the transition."
Common themes that prevailed among both groups of patients included the importance of preparing for the transition early, a desire to be talked to like an adult about their care, the importance of family members as a support system and a desire for more coordination between pediatric offices and adult care offices.
"Standardizing transition preparation programs in pediatric care and introducing transition-oriented clinics for late adolescents and young adults prior to adult care may help address patients' preferences and common transfer-related challenges," Dr. Hilliard and team concluded.
The study was published online October 2 by Diabetes Care, the journal of the American Diabetes Association (ADA). No conflicts of interest were reported.