Handheld Computing for Adolescent Transplant Recipients and Caregivers

描述（申请人提供）：每年近2000名儿童接受实体器官移植。在过去13年中，儿童器官接受者的数量增长了20%，其中青少年的增幅最大（35%）。不幸的是，移植物的损失往往在青春期加速，有限的自我监控和自我护理技能以及不遵守医疗方案的高比率被认为是主要的罪魁祸首。移动医疗技术（MHTs），如Pocket PATH（追踪健康的个人助理）在促进成人移植患者的自我保健方面显示出希望。本研究的目的是测试Pocket PATH(R) （Teen Pocket PATH(R) [TPP]）在青少年实体器官移植患者及其父母中促进自我护理行为和依从性的效果。30名最近接受移植（即移植后6个月内）的青少年实体器官受者及其父母将被随机分配到使用TPP技术的行为干预组或标准护理组。青少年实体器官移植受者和被分配到行为干预组的父母将接受标准治疗，并接受使用便携式电脑/智能手机的培训，该设备具有数据记录、跟踪和消息传递功能，以促进对医疗护理的监测和依从性。青少年实体器官移植受者和被分配到对照组的父母将接受标准护理（包括提供用于跟踪健康信息的纸笔日志），并进行信息介绍，以加强监测和坚持医疗护理的重要性。主要目的是研究跨太平洋伙伴关系技术与标准护理对青少年参与自我护理行为和依从性的影响。拟议的工作符合NINR当前和未来的目标，即资助旨在开发技术以促进自我管理、支持依从性和让患者参与自己的医疗保健的项目。通过为“代表不足或弱势研究人员指导研究科学家发展奖”（K01）制定的培训计划，候选人将获得以下方面的专业知识：开发和测试影响青少年遵守医疗方案的因素的概念模型；2)获得开发和应用干预措施以及儿科慢性病群体临床试验方面的专业知识；3)在测试和衡量移动卫生技术对促进自我保健的影响方面获得专业知识。候选人的长期目标，与NINR的愿景一致，是开发和测试行为和心理干预措施，以促进青少年移植受者及其父母参与他们的卫生保健，以降低发病率和死亡率，最大限度地提高生活质量，并减少卫生保健的利用。

DESCRIPTION (provided by applicant): 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. PUBLIC HEALTH RELEVANCE: 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.