Healthcare transition preparation in adolescents with kidney transplantation or pre-transplant in Cali, Colombia
Maria A. Agredo1, Lina M. Viafara1, Angela Mantilla2, Maria C. Gonzales2, Maria P. Santamaría1, Adriana Palacios6, Jhovana Trejos5, Hernando Londoño1, Maria Ferris4, Medeiros Mara3, Jaime Restrepo1,6.
1Pediatric Nephrology service, Fundación Valle del Lili, Cali, Colombia; 2Solid organ Trasplant service , Fundación Valle del Lili, Cali, Colombia; 3Pediatric Nephrology service, Hospital Infantil de Mexico Federico Gomez, Ciudad de México, , Mexico; 4Health department, The university of north Carolina at Chapel Hill, North Carolina city, NC, United States; 5Nursing school, Universidad del Valle, Cali, Colombia; 6Health sciences department, Universidad Icesi, Cali, Colombia
Background: Graft survival and health-related quality of life (HRQoL) in pediatric kidney transplantation have improved in the last 20 years due to better treatment, surgical techniques, and a closer interdisciplinary follow-up. Despite this, we observe an increase of graft loss in the transition from pediatric- to adult-focused settings due to new challenges related to age, sexual activity, and trouble with parents’ authority. Adolescents exhibit low adherence to treatment and putting at risk the survival graft and HRQoL. Fundación Valle del Líli, in collaboration with the STARx Program at the University of North Carolina Chapel Hill and the HIMFG, started a transition preparation program to improve this process.
Objective: To describe the implementation of a transition program and evaluate its effect on health care transition preparation and self-management among adolescents with kidney transplantation or in a pre-transplant state.
Methods: We performed a quasi-experimental intervention study in all pre- or transplant patients ages 11-19 years, followed at our Pediatric Nephrology Service. Using the TRxANSITION Index, we evaluated disease knowledge and self-management skills before and after a transition educational curriculum delivered in three, 2-hr. sessions. This Index has a maximum score of 10. We performed descriptive analysis and Student’s T-test, using the STATA program version 12.1. Results: We enrolled 35 participants, 54% males, mean age 14.8 ± 2,3 years, and 57% had congenital anomalies of the kidneys and urinary tract as the principal diagnosis. The global baseline score was 5.87±1.96, and the post-test was 8.98 ± 0.82 (p-value =0.00). All areas of the Index showed significant increases. The highest increase was noted on the “Find a new provider” (0.53), followed by “Issues of reproduction (0.51), “Health insurance,” and “Type of illness” (0.34).
Conclusions: The Colombian adaptation of the STARx program with interventions and tools to measure transition (transition Index) significantly improved adolescents’ disease knowledge, self-management, and healthcare transition preparation. Longitudinal observations are underway to determine the persistence of this effect and its potential impact on HRQoL and adherence.