Toward a better understanding of transition from paediatric to adult care in type 1 diabetes: A qualitative study of adolescents

Abstract

Aims Type 1 diabetes is associated with significant morbidity, with an increasing risk of acute diabetes‐related complications in adolescence and emerging adulthood. Purposeful transition from paediatric to adult‐oriented care could mitigate this risk but is often lacking. Detailed understanding of the perspectives of adolescents in their final year of paediatric care is essential to inform delivery of transition care programs. Methods We conducted semi‐structured interviews with adolescents (aged 17 years) with type 1 diabetes at an academic institution from April 2017 to May 2018. Participants were recruited through convenience sampling. Sixty‐one interviews were transcribed for analysis. Coding followed the principles of thematic analysis. Results Thirty‐six percent of participants were male, and participants were from diverse socioeconomic backgrounds. We found three overarching themes in our analysis: first, difficulties navigating changing relationships with parents and healthcare teams; second, the need to increase type 1 diabetes self‐management and differing comfort levels based on age of diagnosis; and third, perceived responsibilities for transition care preparation (for both the paediatric team and adolescents themselves) focused not only on type 1 diabetes‐specific skills but also on healthcare system structures. Conclusions Our findings suggest that novel transition programs addressing changing inter‐personal relationships, disease‐specific self‐management (adapted for age of diagnosis), and healthcare system navigation, supported by parents and peers, may be needed to improve transition care for adolescents with type 1 diabetes.

Diabetes duration, perceived comfort with self‐management and glycaemic control in adolescents with type 1 diabetes: A cross‐sectional study

“…We recently conducted a qualitative study focusing on the perspectives of adolescents in their final year of paediatric care. We found that participants with a longer diabetes duration felt more confident in their ability to manage their condition 13 . On the other hand, previous studies in younger adolescents (ages 11–17 years) have shown that shorter diabetes duration is associated with better adherence to diabetes care activities and better glycaemic control 6,14 .…”

Qualitative study exploring the perspectives of emerging adults with type 1 diabetes after transfer to adult care from a paediatric diabetes centre in Montreal, Canada

“…10 12 15 Previous research examining young adults' experiences have reported several factors contributing to transition challenges, including feeling pushed out of paediatric care, 16 inadequate preparation, [16][17][18] challenges with accessing adult care, 19 desire to transfer earlier or later, 18 reluctance to end relationship with the paediatric team 12 20 and feeling discouraged by briefer visits and directive communication styles in the adult care setting. 19 However, these studies were conducted pretransfer, [21][22][23] in a private payer healthcare setting 15 24-27 had small-sample sizes when examining post-transfer experiences, 28 29 and/ or included a large age range (ie, with many participants being several years to a decade post-transfer). 25 30 We recently examined the experiences and perceptions of adolescents during the pretransfer period (ie, final year of paediatric T1D care) and identified the need for transition programmes to support disease-specific self-management and healthcare system navigation.…”

“…25 30 We recently examined the experiences and perceptions of adolescents during the pretransfer period (ie, final year of paediatric T1D care) and identified the need for transition programmes to support disease-specific self-management and healthcare system navigation. 23 Our current study sought to explore the transition care perceptions of emerging adults living with T1D after their transfer to adult care. The exploration of perceptions of this same cohort after transfer helps complete the narrative on how young adults living with T1D perceive the transition from paediatric to adult care and how this process could be improved.…”

National Trends in Hyperglycemia and Diabetic Ketoacidosis in Children, Adolescents, and Young Adults With Type 1 Diabetes: A Challenge Due to Age or Stage of Development, or Is New Thinking About Service Provision Needed?

“…Data from a self-selecting group in the U.S. has documented this widely recognized pattern ( 1 ), and their later report showed that, despite the increased use of technology, glycemia in people aged 15 to 18 years had deteriorated further ( 2 ). It is commonly assumed that poor communication and changes in continuity and support during the transfer from pediatric to adult services at the age of 16 to 18 years are important reasons ( 3 ) for more severe hyperglycemia at this stage of life. However, the influence of growth-related hormonal change on insulin requirements is also recognized ( 4 ) as a key factor in age-related changes.…”