A B S T R A C THealth information technology (HIT) has great potential for increasing patient engagement. Pediatric hematopoietic cell transplantation (HCT) is a setting ripe for using HIT but in which little research exists. "BMT Roadmap" is a web-based application that integrates patient-specific information and includes several domains: laboratory results, medications, clinical trial details, photos of the healthcare team, trajectory of transplant process, and discharge checklist. BMT Roadmap was provided to 10 caregivers of patients undergoing firsttime HCT. Research assistants performed weekly qualitative interviews throughout the patient's hospitalization and at discharge and day 100 to assess the impact of BMT Roadmap. Rigorous thematic analysis revealed 5 recurrent themes: emotional impact of the HCT process itself; critical importance of communication among patients, caregivers, and healthcare providers; ways in which BMT Roadmap was helpful during inpatient setting; suggestions for improving BMT Roadmap; and other strategies for organization and management of complex healthcare needs that could be incorporated into BMT Roadmap. Caregivers found the tool useful and easy to use, leading them to want even greater access to information. BMT Roadmap was feasible, with no disruption to inpatient care. Although this initial study is limited by the small sample size and singleinstitution experience, these initial findings are encouraging and support further investigation.
When I was a little girl, my mom or dad would tuck me in at night. I would make each parent complete the ritual of saying goodnight to my stuffed animals and dolls. There was a giant stuffed bunny whose name now escapes me and a multitude of Beanie Babies. There was my Raggedy Ann doll, and there were two plump handmade dolls named Peppermint and Tom. To me, it was essential that each of these entities be kissed and greeted every night, as a reminder that he or she was loved. I was certain the toys would feel terribly sad if neglected. Looking back, I'm sure my parents found this repetitive behavior tiresome, but they tolerated it out of love. This was the first time I remember feeling responsible for the well-being of someone else. "Goodnight, Peppermint," we would say together. "Goodnight, Tom. Goodnight, Raggedy Ann."Twenty years later, I was well into my second year of medical school. I had weathered the storm of the first year of basic sciences and was now struggling to understand neuropathology. I had scored very poorly on the first week's quiz, so I needed a much higher mark on the second quiz if I wanted to pass the neuroscience sequence.The night before the second quiz, I remember scrolling through what seemed like an endless series of lecture slides on movement disorders. Each slide presented
When I was a little girl, my mom or dad would tuck me in at night. I would make each parent complete the ritual of saying goodnight to my stuffed animals and dolls. There was a giant stuffed bunny whose name now escapes me and a multitude of Beanie Babies. There was my Raggedy Ann doll, and there were two plump handmade dolls named Peppermint and Tom. To me, it was essential that each of these entities be kissed and greeted every night, as a reminder that he or she was loved. I was certain the toys would feel terribly sad if neglected. Looking back, I'm sure my parents found this repetitive behavior tiresome, but they tolerated it out of love. This was the first time I remember feeling responsible for the well-being of someone else. "Goodnight, Peppermint," we would say together. "Goodnight, Tom. Goodnight, Raggedy Ann."Twenty years later, I was well into my second year of medical school. I had weathered the storm of the first year of basic sciences and was now struggling to understand neuropathology. I had scored very poorly on the first week's quiz, so I needed a much higher mark on the second quiz if I wanted to pass the neuroscience sequence.The night before the second quiz, I remember scrolling through what seemed like an endless series of lecture slides on movement disorders. Each slide presented testable information on the signs, symptoms,
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.