Healthcare transition is broadly defined as “’the purposeful, planned process that addresses the medical, psychosocial, educational and vocational needs of adolescents and young adults as they grow up learning to live with their lifelong health condition (Sheehan, While & Coyne 2015).” Healthcare transition of the young adult with type 1 diabetes is a high-risk period associated with poor glycemic control, disengagement with healthcare providers and increased risk of complications (Sheehan et al., 2015). Garvey et al (2014) conducted a study to help explore the experience of transition from pediatric to adult diabetes care by speaking with emerging adults with type 1 diabetes who were post transition. Patients perceived the transfer of care as nonpurposeful. Patients felt that they were vulnerable during this time and that providers did not address concerns relevant to them. Patients were unprepared for the differences in the pediatric healthcare setting and adult setting; they equated the experience to feeling like a “fish out of water.”
Few studies have been conducted on the use of a transition program in this population. A multi-centered randomized trial in Canada aimed to determine if a structured transition program with the use of a transition coordinator would prove to be beneficial to young adults with type 1 diabetes during the transition period. Findings included that the structured transition group with the use of the transition coordinator, attended more clinic visits, reported that they were more satisfied with their care and reported less emotional burden of diabetes (American Diabetes Association, 2017).
In the rural setting, lack of pediatric endocrinologists can be a barrier to transition of care for young adults with type 1 diabetes. After conducting structured interviews with a small focus group of young adults with type 1 diabetes in rural Pennsylvania in March of 2018, some common concerns about the transition period emerged. The individuals were at multiple points on their transition journey, as some had transitioned already, some had some knowledge about the need for transitions, and others were unsure about the process. All felt as though they received no guidance from their pediatric providers when transitioning to an adult care setting regardless if they had transitioned or not. They noted a difference in environment, with the pediatric setting described as more “nurturing.” A common challenge for these individuals was college. It was difficult to keep appointments around school schedules. Many said they felt “embarrassed” because they did not want their friends to know they had a chronic health condition. Blood glucose testing was hard due to lack of clean areas to test; lack of healthy food choices was a barrier. They stated they were learning to deal with their diabetes on their own, when previously their family members were more involved and able to assist with their care.
The need for a transition program for young adults with type 1 diabetes is crucial in rural areas where there is a lack of pediatric endocrinologists; these young adults must travel 70 miles to a larger, urban hospital to receive their care. The goal of this project is to implement a program to assist young adults with type 1 diabetes to have a smooth and effective transition to an adult endocrinologist. Our project will evaluate the implementation process of this program, usage, as well as patient and provider satisfaction.
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