Personalized Engagement Tool for Pediatric BMT Patients and Caregivers

描述（由申请人提供）：骨髓移植（BMT），通常称为造血细胞移植（HCT），是许多恶性和非恶性疾病的潜在救命疗法。尽管在过去十年中取得了进展，导致了结果的改善，但BMT仍然是一种强烈的治疗方式，通常需要长期的住院护理。虽然许多患者忍受手术的急性并发症，但BMT患者及其护理人员通常会增加经济和情感负担，再次入院和卫生服务利用的风险。这突出了BMT患者积极参与自己的健康护理（自我效能）的重要性。对于儿童BMT患者，父母是主要的照顾者。因此，代表儿童（患者）的父母激活在有效的患者-父母-提供者伙伴关系中起着关键作用，这越来越被认为是医疗保健提供的最佳模式，特别是对于那些面临改变生活的医疗治疗的人。必须制定有效的战略来加强这种伙伴关系。卫生信息技术（IT）介导的工具提供了克服限制提供医疗服务的提供者的时间，复杂的健康信息，和财政压力的限制。在常规住院护理中，特别是对于高危或危重人群，在使用低成本和广为接受的交付平台的卫生信息技术工具方面存在重大知识差距。我们假设，一个基于表格的工具，显示个人健康信息可以提供一个平台，以促进照顾者（父母）的激活和加强健康沟通。该应用程序的具体目标（SA）是：1）在为接受BMT的儿童的父母开发基于平板电脑的个性化参与工具（PET）时，了解用户需求。 2)在接受骨髓移植的儿童的父母中进行PET系统的试点和可行性研究。我们提出了一个试点和可行性项目。代表儿童的父母激活理论指导了在开发新型PET系统（SA 1）时生成用户需求的新知识的目标，随后在接受BMT的儿童的父母中实施和评价PET系统（SA 2）。我们将使用完善的以用户为中心的设计过程，包括定性和定量的研究方法，以实现目标。聚集的研究人员代表了一个强大的多学科团队，具有互补和综合的专业知识，他们准备好进行拟议的研究。该研究解决了文献中关于健康IT在高风险BMT人群住院环境中代表儿童的父母激活中的作用的空白。PET系统提供了一个强大的实验框架，用于进一步测试与父母激活相关的其他护理组件的效用 以及在其他复杂的医疗条件下的潜在采用。因此，本文获得的新知识将有助于健康信息技术如何提高医疗保健质量的证据基础，并为全面临床试验的进一步研究提供基础。

DESCRIPTION (provided by applicant): Bone marrow transplantation (BMT), commonly referred to as hematopoietic cell transplantation (HCT), is a potentially life-saving therapy for many malignant and non-malignant conditions. Despite advances over the past decade, which have led to improved outcomes, BMT remains an intense treatment modality often requiring prolonged inpatient-based care. While many patients endure the acute complications of the procedure, it is common for BMT patients and their caregivers to experience increased risk of financial and emotional burden, hospital readmission, and health service utilization. This highlights the importance of active involvement of BMT patients in their own health care (self-efficacy). For pediatric BMT patients, parents are the primary caregivers. As such, parental activation on behalf of the child (patient) plays a critical role in effective patient-parent-provier partnerships, which is increasingly recognized as the optimal model for health care delivery, particularly for those facing life-altering medical treatments. It is essential to develop effectiv strategies to enhance this partnership. Health information technology (IT)-mediated tools offer the potential to overcome constraints in health care delivery limited by provider time, complicated health information, and financial pressures. Significant gaps in knowledge exist on the use of health IT tools using low-cost and well- accepted delivery platforms in routine inpatient care, especially for high-risk or critically ill populations. We hypothesize that a table-based tool displaying personal health information could provide a platform to promote caregiver (parent) activation and enhance health communication. The specific aims (SA) of the application are: 1) To generate understanding of user needs in the development of a tablet-based Personalized Engagement Tool (PET) for parents of children undergoing BMT. 2) To conduct a pilot and feasibility study of the PET system in parents of children undergoing BMT. We propose a pilot and feasibility project. The theory of parent activation on behalf of the child guides the aims to generate new knowledge of user needs in the development of a novel PET system (SA1), followed by the implementation and evaluation of the PET system in parents of children undergoing BMT (SA2). We will use well-established user-centered design processes that include qualitative and quantitative research methods to achieve the aims. The assembled investigators represent a strong multidisciplinary team with complementary and integrated expertise who are well-poised to carry out the proposed research. The study addresses a gap in the literature on the role of health IT in parent activation on behalf of the child in the inpatien setting of a high- risk BMT population. The PET system provides a robust experimental framework for further testing the utility of other care components that relate to parent activation and for potential adoption in other complex medical conditions. The new knowledge gained herein will thus contribute to the evidence base of how health IT improves health care quality and provide the basis of further study in a full-scale clinical trial.