Impact of a health information technology tool addressing information needs of caregivers of adult and pediatric hematopoietic stem cell transplantation patients
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We developed BMT Roadmap, a health information technology (HIT) application on a tablet, to address caregivers’ unmet needs with patient-specific information from the electronic health record. We conducted a preliminary feasibility study of BMT Roadmap in caregivers of adult and pediatric HSCT patients. The study was registered on ClinicalTrials.gov (NCT03161665; NCT02409121).
BMT Roadmap was delivered to 39 caregivers of adult and pediatric patients undergoing first-time HSCT at a single study site. We assessed person-reported outcome measures (PROMs) at baseline (hospital admission), discharge, and day 100: usefulness of BMT Roadmap (Perceived Usefulness); activation (Patient Activation Measure-Caregiver version [PAM-C]); mental health ([POMS-2®]: depression, distress, vigor, and fatigue); anxiety (State-Trait Anxiety Inventory); and quality of life (Caregiver Quality of Life Index-Cancer [CQOLC]). To identify determinants of caregiver activation and quality of life, we used linear mixed models.
BMT Roadmap was perceived useful and activation increased from baseline to discharge (p = 0.001). Further, burden decreased through discharge (p = 0.007). Overall, a pattern of increasing vigor and decreasing depression, distress, fatigue, and anxiety was apparent from baseline to discharge. However, overall quality of life lowered at discharge after accounting for BMT Roadmap use, depression, anxiety, and fatigue (p = 0.04).
BMT Roadmap was a feasible HIT intervention to implement in HSCT caregivers. BMT Roadmap was associated with increased activation and decreased burden, but quality of life lowered across hospitalization. Findings support the need to further develop caregiver-specific self-directed resources and provide them both inpatient and outpatient across the HSCT trajectory.
KeywordsInformation technology Bone marrow transplantation Caregivers Mental health
This work was presented at the Transplantation and Cellular Therapy Meeting of ASBMT and CIBMTR (02/2018: Salt Lake City, UT) and the Society of Behavioral Medicine Annual Meeting (04/2018: New Orleans, LA). We wish to thank the patients and families who participated in this clinical research study.
Alex Fauer: Investigation, methodology, writing-original draft, writing-review/editing; Flora Hoodin: Data curation, formal analysis, methodology, supervision, validation, visualization, writing-original draft, writing-review/editing; Leah Lalonde, Casiana Warfield, Kristina Brookshire, and Michelle Byrd: Formal analysis, methodology, visualization, writing-review/editing; Josh Errickson: Formal analysis, methodology, visualization, writing-review/editing; Lyndsey Runaas and John Magenau: Investigation, writing-review/editing; Tracey Churay: Project administration, writing-review/editing; Sajjad Seyedsalehi: Software, writing-review/editing; Grant Chappell, Dima Chaar, and Jiyoun Shin: Data curation, visualization, writing-review/editing; David Hanauer and Sung Won Choi: Conceptualization, data curation, formal analysis, funding acquisition, investigation, methodology, resources, supervision, validation, visualization, writing-original draft, writing-review/editing.
This work was supported by AHRQ (R21HS23613), Fostering Innovations Grant, Gracie Leukemia Grant, and the Rita & Alex Hillman Foundation.
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflicts of interest.
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