Personalized Engagement Tool for Pediatric BMT Patients and Caregivers

描述(申请人提供)：骨髓移植(BMT)，通常被称为造血细胞移植(HCT)，对于许多恶性和非恶性疾病是一种潜在的挽救生命的疗法。尽管在过去十年中取得了进展，导致了结果的改善，但骨髓移植仍然是一种高强度的治疗方式，通常需要长期的住院护理。虽然许多患者忍受着该手术的急性并发症，但对于骨髓移植患者及其照顾者来说，经济和情感负担、再次住院和卫生服务利用的风险增加是常见的。这凸显了骨髓移植患者积极参与自身保健(自我效能)的重要性。对于儿童骨髓移植患者，父母是主要的照顾者。因此，父母代表儿童(患者)的激活在有效的患者-父母-提供者伙伴关系中发挥着关键作用，这种伙伴关系越来越被认为是提供卫生保健的最佳模式，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)中介的工具提供了克服卫生保健提供中受提供者时间、复杂的卫生信息和财务压力限制的限制的潜力。在常规住院护理中，特别是在高危或危重人群中，在使用低成本和广为接受的交付平台使用卫生信息技术工具方面，知识存在重大差距。我们假设，一个显示个人健康信息的基于表格的工具可以提供一个促进照顾者(父母)激活和增强健康沟通的平台。该应用程序的具体目标(SA)是：1)在为接受骨髓移植的儿童的父母开发基于平板的个性化参与工具(PET)时，了解用户的需求。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。父母代表儿童激活的理论指导了在开发新的PET系统(SA1)时产生新的用户需求知识的目标，随后在接受BMT的儿童的父母中实施和评估了PET系统(SA2)。我们将使用成熟的以用户为中心的设计过程，包括定性和定量的研究方法来实现这些目标。聚集的研究人员代表了一支强大的多学科团队，拥有互补和综合的专业知识，他们已经做好了开展拟议研究的准备。这项研究解决了在高危骨髓移植人群的住院环境中，健康信息技术在代表儿童的父母激活方面所扮演的角色的文献中的一个空白。PET系统为进一步测试与父母激活相关的其他护理组件的效用提供了强大的实验框架 并可能在其他复杂的医疗条件下采用。因此，本文获得的新知识将有助于为医疗信息技术如何提高医疗保健质量提供证据基础，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.