Cozumel Pruette, a pediatric nephrologist, discusses her clinical research priority of improving the transition of care for adolescents and young adults with kidney disease. Researchers at Johns Hopkins developed a transition-of-care program for adolescents and young adults who have undergone kidney transplantation.
Hello, my name is Cozumel Pruitt and I'm an assistant professor in pediatrics at the Johns Hopkins Children's Center. I'm the clinical medical director in the division of pediatric nephrology and serve as the director for the transition program in the Comprehensive Transplant Center at Johns Hopkins. One of our research priorities is improving transition of care for adolescents and young adults with kidney disease. Transition of care from pediatric to adult care has many challenges. The expectations and experience of the adolescents and young adults upon transfer to adult facilities are often vastly different with many adolescents and young adults ill prepared for the transition. Similar to older adults with kidney failure, the adolescence and young adult is expected to be autonomous in their disease management. Though even among healthy adolescents and young adults, the higher executive functions needed to successfully manage one's chronic disease such as reasoning and impulse control do not fully mature until their mid twenties. Furthermore, many patients with chronic kidney disease or kidney failure often struggle with cognitive and developmental delays. The challenges noted here have likely contributed to adverse outcomes for the adolescents and young adults with kidney failure. There's several studies that have demonstrated that this group has an increased risk of medical complications, problems with treatment and medication adherence and higher emergency department and hospital use. When there is a lack of structured transition and transfer to adult care. At Johns Hopkins, we have developed a transition of care program for adolescents and young adults who have undergone kidney transplantation. And this program has been in existence for more than 15 years. Now. Previously, there has not been a comprehensive transition of care program specifically tailored to adolescence and young adults on dialysis due to the clear need and potential benefit of a structured transition for our young patients on dialysis. We through the standardizing care to improve outcomes in pediatric and stage renal disease or scope. Collaborative have led the effort to develop and implement a transition of care program for adolescents and young adults on dialysis. The children's hospital association scope dialysis collaborative is a multi center quality improvement initiative with 57 participating dialysis sites. A transition of care innovation work group was formed within this collaborative a few years ago. With the goal of developing a comprehensive and robust transition program. Through the transition of care innovation work group, we developed a program with nine educational modules along with an introductory letter for patients and families, an assessment tool and a transfer guidance document to be utilized by the scope centers. We conducted a four month pilot implementation study among six centers with patients aging 11 to 21 years old, the transition of care tools were further refined following this pilot study and broader implementation within the collaborative is still ongoing. We conducted an interim assessment of transition tool utilization and implementation success among 11 different scope centers. And this has served as a foundation towards broader discussion regarding process barriers and success towards transition of care implementation among 26 centers. Through this broader implementation of the transition of care program, we identified several important findings we identified that having a transition champion was a key driver of successful implementation. Lack of institutional support and collaboration with adult dialysis centers were important barriers towards sustainability. In addition, staff turnover within dialysis units was noted to have an effect on more long term implementation of the transition of care program. These barriers are ones that warrant further study and attention at the institutional and system level. To date, our study represents the experience of the largest cohort of pediatric dialysis centers focused on the development and implementation of a transition of care program. The study contributes valuable dialysis specific transition and transfer resources that are available to this vulnerable group of patients, transitioning from pediatric to adult dialysis care.
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