Novel Health Information Technology Tool Use by Adult Patients Undergoing Allogeneic Hematopoietic Cell Transplantation: Longitudinal Quantitative and Qualitative Patient-Reported Outcomes

Abstract

PurposeHealth information technology (IT) is an ideal medium to improve the delivery of patient-centered care and increase patient engagement. Health IT interventions should be designed with the end user in mind and be specific to the needs of a given population. Hematopoietic cell transplantation (HCT), commonly referred to as blood and marrow transplantation (BMT), is a prime example of a complex medical procedure where patient-caregiver-provider engagement is central to a safe and successful outcome. We have previously reported on the design and development of an HCT-specific health IT tool, BMT Roadmap. MethodsThis study highlights longitudinal quantitative and qualitative patient-reported outcomes (PROs) in 20 adult patients undergoing allogeneic HCT. Patients completed PROs at three time points (baseline, day 30 post-HTC, and day 100 post-HCT) and provided weekly qualitative data through semistructured interviews while using BMT Roadmap. ResultsThe mean hospital stay was 23.3 days (range, 17 to 37 days), and patients had access to BMT Roadmap for a mean of 21.3 days (range, 15 to 37 days). The total time spent on BMT Roadmap ranged from 0 to 139 minutes per patient, with a mean of 55 minutes (standard deviation, 47.6 minutes). We found that patients readily engaged with the tool and completed qualitative interviews and quantitative PROs. The Patient Activation Measure, a validated measure of patient engagement, increased for patients from baseline to discharge and day 100. Activation was significantly and negatively correlated with depression and anxiety PROs at discharge, suggesting that this may be an important time point for intervention. ConclusionGiven the feasibility and promising results reported in this study, next steps include expanding our current health IT platform and implementing a randomized trial to assess the impact of BMT Roadmap on critical PROs.

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

“…In this study, we found no significant differences in BMT Roadmap use between caregiver groups. Consistent with our previous findings in adult HSCT patients [23], the laboratory module was the most viewed and discharge checklist was the least viewed. Interestingly, adult caregivers spent significantly more time utilizing the medication and phases-of-care modules than pediatric caregivers.…”

“…Nonetheless, we recognize the limitations of our work. As previously reported in adult HSCT patients [23], caregivers also faced technological barriers related to logging into the secure hospital wireless network, which was a security requirement (i.e., being timed-out after 10 minutes and having to re-log into the application). The study population was homogeneous, including mostly female, white/Caucasian, and highly educated caregivers from a single institution.…”

Acute Care Patient Portal Intervention: Portal Use and Patient Activation

“…We measured patient and care partner use of the portal by recording user actions in our database and leveraged previously reported measures of portal usage for comparison [7,11,20,22,27-29]. Measures included the number of visits to each page, the number of days used, length of users’ access period, and average percent of days used during the access period.…”

“…Similarly, O’Leary found that the use of an acute care patient portal had no significant effect on patient activation scores [21]. Another study found that patient activation scores increased over time with the use of an acute care patient portal designed for patients undergoing hematopoietic cell transplantation, but not linearly, suggesting that a sweet spot of utilization may exist [22]. However, these previous studies had small sample sizes and the study results may be insufficient to characterize the association of the use of an acute care patient portal with patient activation.…”

Harnessing mobile health technology to support long-term chronic illness management: Exploring family caregiver support needs in the outpatient setting

“…However, the app was targeted a priori for the inpatient setting, and to primarily serve as a source of patient-related information. User experience interviews highlighted the ongoing caregiving journey beyond the hospital, and the need for caregiver support in the outpatient setting, such as emphasis on caregiver-specific resources to promote caregiver health and well-being (25). The current study aimed to explore the lived experiences of BMT caregivers in the outpatient context.…”