Perspectives from Before and After the Pediatric to Adult Care Transition: A Mixed-Methods Study in Type 1 Diabetes
- Marisa E. Hilliard, PhD1,
- Jessamyn G. Perlus2,
- Loretta M. Clark, RN BSN CDE3,
- Denise L. Haynie, PhD2,
- Leslie P. Plotnik, MD1,
- Ines Guttmann-Bauman, MD3 and
- Ronald J. Iannotti, PhD2⇑
- 1Johns Hopkins University School of Medicine, Baltimore, MD
- 2Eunice Kennedy Shriver National Institute of Child Health and Human Development, Bethesda, MD
- 3Johns Hopkins Hospital, Baltimore, MD
- Corresponding author: Ronald J. Iannotti, E-mail:
Objective Among the many milestones of adolescence and young adulthood, transferring from pediatric to adult care is a significant transition for those with type 1 diabetes. The aim of this study was to understand the concerns, expectations, preferences, and experiences of pre-transition adolescents and parents and post-transition young adults.
Research Design and Methods Participants completed questionnaires and responded to open-ended qualitative questions regarding self-management, self-efficacy, and their expectations and experiences with pediatric and adult care providers across the transition process.
Results At a mean age of 16.1 years, most pre-transition adolescents had not yet discussed transferring care with their parents or doctors. Although many post-transition young adults reported positive, supportive interactions, several described challenges locating or establishing a relationship with an adult diabetes provider. Qualitative themes emerged related to anticipated timing of transfer, early preparation for transition, desiring developmentally appropriate interactions with providers, maintaining family and social support, and strategies for coordinating care between pediatric and adult providers.
Conclusion 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.
- Received June 6, 2013.
- Accepted September 12, 2013.
- © 2013 by the American Diabetes Association.
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