Abstract
BACKGROUND: Transfer from a pediatric to an adult medical setting is associated with many barriers. Additionally, there are little data on patients' assessment of the transition process itself. 3 years ago at Lurie Children's Hospital of Chicago, we established a kidney transition program with the help of an adult nephrologist, physician assistant (PA) and social worker (LCSW). After 18 months, we evaluated the patients' perception of the program as part of a continuous quality initiative process. METHODS: Patients who had transitioned from pediatric care and were seen at least once in the adult nephrology clinic were anonymized and asked to take an established 5-point Likert scale survey. Survey questions addressed readiness to transition, the transition process itself, and the perception of adult care. Surveys were followed with semi-structured interviews. 3 readers rated each response as either "negative," "neutral," or "positive." Average, standard deviation and reader reliability were calculated. The readers also selected a word that best depicted each response and those most-common words were counted by question and overall. RESULTS: 17 out of 42 patients (40%) completed the survey. Average age at transition (mean + SD) was 20 + 2 years; the majority of patients (82%) felt ready to transfer to adult care but only 59% felt they were consulted on the timing. 88% of patients felt having a transition appointment and meeting the adult care providers in the pediatric setting to be valuable. Although 94% of patients ultimately felt comfortable in the adult care environment, 18% experienced noticeable differences in treatment recommendations. 13 semi-structured interviews were conducted. Overall, the patients responded positively (3 + 0, 100% reader reliability) to the transition. But, when asked what could have improved the transition, the word the patients used most was, "earlier." CONCLUSION: Young adults (YA) transitioning to adult care often feel ready to transition earlier than their transfer of care date. They subjectively benefit from a transition program that outlines the process of transferring their care. Many YA patients would benefit from a transition program that bolsters patient independence during early adult care visits.