Impact of a health information technology tool addressing information needs of caregivers of adult and pediatric hematopoietic stem cell transplantation patients

Alex J Fauer, Flora Hoodin, Leah Lalonde, Josh Errickson, Lyndsey Runaas, Tracey Churay, Sajjad Seyedsalehi, Casiana Warfield, Grant Chappell, Kristina Brookshire, Dima Chaar, Ji Youn Shin, Michelle Byrd, John Magenau, David A Hanauer, Sung Won Choi, Alex J Fauer, Flora Hoodin, Leah Lalonde, Josh Errickson, Lyndsey Runaas, Tracey Churay, Sajjad Seyedsalehi, Casiana Warfield, Grant Chappell, Kristina Brookshire, Dima Chaar, Ji Youn Shin, Michelle Byrd, John Magenau, David A Hanauer, Sung Won Choi

Abstract

Purpose: 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).

Methods: 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.

Results: 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).

Conclusions: 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.

Keywords: Bone marrow transplantation; Caregivers; Information technology; Mental health.

Conflict of interest statement

CONFLICTS-OF-INTEREST

The authors have no conflicts-of-interest to disclose.

Figures

Figure 1.
Figure 1.
Adult and Pediatric Caregiver Consort Diagram
Figure 2.
Figure 2.
Person Reported Outcome Measures Figure 2A. Anxiety T Scores (Lower more desirable)
Figure 2B.
Figure 2B.
Distress T Scores (Lower more desirable)
Figure 2C.
Figure 2C.
Depression T Scores (Lower more desirable)
Figure 2D.
Figure 2D.
Vigor T Scores (Higher more desirable)
Figure 2E.
Figure 2E.
Fatigue T Scores (Lower more desirable)
Figure 2F.
Figure 2F.
Percent of caregivers with clinically significant distress
Figure 2G.
Figure 2G.
Activation (Higher more desirable)
Figure 2H.
Figure 2H.
Quality of Life (Lower more desirable)
Figure 2I.
Figure 2I.
Burden (Lower more desirable)
Figure 2J.
Figure 2J.
Disruptiveness (Lower more desirable)
Figure 2K.
Figure 2K.
Positive Adaptation (Lower more desirable)
Figure 2L.
Figure 2L.
Financial Concerns (Lower more desirable)
Figure 3.
Figure 3.
Mean Predicted Activation by Care Role and Perceived Usefulness

Source: PubMed

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