Handheld Computing for Adolescent Transplant Recipients and Caregivers

描述(申请人提供)：每年有近2000名儿童接受实体器官移植。在过去的13年里，接受儿科器官移植的人数增长了20%，其中青少年的增幅最大(35%)。不幸的是，移植物丢失往往在青春期加速，自我监测和自我护理的技能有限，以及不遵守药物治疗方案的高比率被认为是主要罪魁祸首。移动健康技术(MHTs)，如Pocket Path(R)(个人健康跟踪助理)，在促进成人移植患者的自我护理方面显示出了希望。本申请中提出的研究目标是测试Pocket Path(R)(Teen Pocket Path(R)[TPP])的适应性对促进青少年实体器官移植患者及其父母的自我护理行为和坚持的有效性。30名最近移植的(即移植后6个月内)青少年实体器官接受者和他们的父母将被随机分配到使用TPP技术的行为干预或标准护理条件下。分配给行为干预的青少年实体器官移植接受者和父母将接受标准护理，并获得使用具有数据记录、跟踪和消息传递功能的袖珍PC/智能手机的培训，以促进对医疗保健的监测和遵守。青少年实体器官移植接受者和父母将得到标准护理(包括提供用于跟踪健康信息的纸和铅笔日志)和一次信息会，强调监测和坚持医疗护理的重要性。主要目的将是检查TPP技术与标准护理对青少年参与自我护理行为和坚持的影响。拟议的工作与NINR目前和未来的目标一致，即资助旨在开发技术以促进自我管理、支持坚持并让患者参与自己的医疗保健的项目。通过为代表不足或处境不利的研究人员的导师研究科学家发展奖(K01)开发的培训计划，候选人将获得影响青少年遵守医疗方案的因素的概念模型的开发和测试方面的专业知识，2)获得针对儿科慢性疾病群体的干预措施和临床试验的开发和应用方面的专业知识，以及3)在测试和衡量移动医疗技术在促进自我护理方面的影响方面获得专业知识。与NINR的愿景一致，候选人的长期目标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医疗保健，从而降低发病率和死亡率，最大限度地提高生活质量，并减少医疗保健利用率。

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.