Personalized Engagement Tool for Pediatric BMT Patients and Caregivers

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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.