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Department of Medicine and Pediatrics
George Washington University School of Medicine and Health Sciences
Senior Medical Director, The National Alliance
Co-Director, Got Transition
Patience H. White, MD, MA, has no relevant conflicts of interest to report.
Youth with childhood-onset growth hormone deficiency (GHD) will need to continue growth hormone (GH) throughout the transition years and into adulthood. The American Association of Clinical Endocrinologists and the American College of Endocrinology published consensus guidelines in 2019 recommending GH replacement therapy during these transition years. Even with evidence supporting the need for ongoing GH replacement, implementation of these guidelines continues to be inconsistent between pediatric and adult endocrinologists. Both pediatric and adult endocrinologists report barriers in optimizing transition care and encouraging young adults to continue their GH therapy. This lack of adherence to medications and follow-up care in adult care is a common issue that results in the lack of care continuity during these transition years.
Healthcare Transition Needs
The process of moving from pediatric to adult care is referred to as “healthcare transition” or HCT. HCT is the “purposeful, planned movement of adolescents and young adults with and without chronic physical, behavioral, and developmental conditions from child-centered to adult-oriented healthcare systems.” It not only represents the passage from one developmental stage to another (dependence to independence to interdependence), but also represents the passage from one type of care to another (pediatric/family-centered care to adult/patient-centered care) and often the change to a different healthcare setting. Although all youth transition to adult-focused care, usually between the ages of 18 and 21, youth with chronic conditions such as those with GHD typically require a more explicit process of transition planning and integration into adult healthcare, to address barriers to continuity of care, lack of disease education about the need for continued GH replacement, and lack of knowledge about managing their own health.
Pediatric endocrinologists have seldom developed standardized processes to plan for HCT of their young adult patients with GHD, and often there is a lack of communication between pediatric and adult endocrinologists. As a result, the young adult falls through the cracks between the 2 practices. Adult endocrinologists similarly have not established clinical processes to integrate new young adults into their practices, and many report being unfamiliar with how to manage and engage a young adult with pediatric-onset GHD.
Structured Healthcare Transition Process
Systematic literature reviews have documented that having a structured healthcare transition process statistically improves youth’s and young adults’ adherence to care and self-care management skills, improves their HCT experience, and improves follow-up in the adult healthcare system. A structured transition process should include three components: (1) planning, (2) transfer, and (3) integration into adult healthcare. These steps should occur over time, beginning in early adolescence around the age of 12-14 years in a pediatric approach to care and continuing into young adulthood in an adult approach to care.
The American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians joined together in publishing guidelines for healthcare professionals on healthcare transition within the medical home. The guidelines endorsed the Six Core Elements of HCT process, which outlines steps that both pediatric and adult practices can take to create a structured process. This Six Core Elements process has been shown to improve the HCT process in primary and specialty practices.
Pediatric and adult endocrinologists can learn about implementing the Six Core Elements process to improve their practice’s approach to HCT by looking at this resource at Gottransition.org. Many of the tools in the Six Core Elements are available to be customized, and in particular, 2 tools have been adapted specifically for young adults with GHD: a self-care assessment for young adults to assist with learning key self-care skills and a medical summary template to support communication about the young adult between the pediatric and adult endocrinologists.
This structured Six Core Elements of HCT process will improve the young adult’s adherence and self-care skills, assist pediatric endocrinologists with developing a planning and transfer communication HCT process, and assist adult endocrinologists to engage young adults in their own healthcare so they will not be lost to follow-up and will retain continuity of care.
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