Nearly 2,000 children receive a solid organ transplant every year. Over the past 13 years, the number of pediatric organ recipients grew by 20% with the largest increase (35%) among adolescents. Unfortunately, graft loss tends to accelerate in adolescence and limited skills in self-monitoring and self-care alongside high rates of non-adherence to the medical regimen have been cited as being major culprits. Mobile health technologies (MHTs) such as Pocket PATH(R) (Personal Assistant for Tracking Health) have shown promise in promoting self-care among adult transplant patients. The goal of the research proposed in this application is to test the efficacy of an adaptation of Pocket PATH(R) (Teen Pocket PATH(R) [TPP]) to promote self-care behaviors and adherence among adolescent solid organ transplant patients and their parents. Thirty recently transplanted (i.e., within 6 months post-transplantation) adolescent solid organ recipients and their parents will be randomly assigned to either a behavioral intervention utilizing TPP technology or a standard care condition. Adolescent solid organ transplant recipients and parents assigned to the behavioral intervention will receive standard care and be provided with and trained in the use of a pocket PC/smartphone with data recording, tracking, and messaging capabilities to promote monitoring of and adherence to medical care. Adolescent solid organ transplant recipients and parents assigned to the control condition will receive standard care (which includes provision of paper and pencil logs for tracking health information) and an informational session reinforcing the importance of monitoring and adherence to medical care. The primary aim will be to examine the impact of TPP technology versus standard care on the participation of adolescents in self-care behaviors and adherence. The proposed work is consistent with NINR's current and future goals to fund projects aimed at developing technologies to promote self-management, support adherence and involve patients in their own healthcare. Through the training program developed for this Mentored Research Scientist Development Award for Underrepresented or Disadvantaged Investigators (K01) the candidate will gain expertise in the development and testing of conceptual models of factors affecting adolescent adherence to medical regimens, 2) gain expertise in the development and application of interventions and clinical trials with pediatric chronically ill groups, and 3) gain expertise in testing and measuring the impact of mobile health technologies in promoting self-care. The candidate's long-term goals, consistent with NINR's vision, are to develop and test behavioral and psychological interventions to promote adolescent transplant recipients'and their parents'involvement in their health care in order to reduce morbidity and mortality, maximize quality of life, and reduce health care utilization.
The research conducted will provide an innovative mobile health technology behavioral intervention for promoting and monitoring health behaviors and adherence among solid organ adolescent transplant recipients and their parents. The training and research activities will ensure that the applicant creates a behavioral intervention that is effective and acceptable to adolescents and their parents which can positively impact morbidity, mortality, quality of life, and health care utilization.
