Background: The rapid adoption of mobile technology by the public and increased emphasis on patient engagement yields an opportune time to leverage health information technology (IT). Yet, a knowledge deficit exists on the use of health IT tools for high-risk populations. Pediatric blood and marrow transplant (BMT) is a medically complex and intense intervention. We have previously shown that BMT patients and caregivers have significant information needs. As such, caregiver activation on behalf of the patient may play an important role in fostering an effective patient-caregiver-provider partnership, which is increasingly recognized as the optimal model for health care delivery. Anxiety over outcomes, compounded by information overload may limit successful activation. Health IT tools offer the potential to overcome constraints in health care delivery limited by provider time and complex health information. We hypothesized that a tablet-based tool displaying personalized health information, including real-time data from the electronic health record, could provide a platform to promote caregiver activation. The implementation and evaluation of our health IT tool (BMT Roadmap) was based on generation of user-centered needs and in collaboration with a trans-disciplinary team, including experts in BMT, health communications, psychology/health behavior, biostatistics, health informatics, and human-computer interaction research. BMT Roadmap included the following domains: 1) laboratory results; 2) medications; 3) clinical trial enrollment; 4) health care provider directory; 5) phases of transplant; and 6) interactive discharge checklist with professionally produced videos on central line care.

Methods: Caregivers of pediatric BMT patients were recruited and enrolled on this IRB-approved study. They were instructed to use BMT Roadmap freely throughout the patient's admission. Data collection included mixed methods approaches. System log-use data were recorded, including number of log-ins, domains frequented, and duration of use. Quantitative survey measurements were obtained at baseline (admission), discharge, and day 100 after BMT. These validated surveys measured activation, mood, anxiety, satisfaction, quality of life, and caregiver distress. In depth qualitative interviews were performed at baseline, weekly during admission, at discharge, and at day 100. Both inductive and deductive analysis was used to identify themes for further study.

Results: Ten caregivers participated in the study: 80% female, 90% white, median age 36 years (25-54 years). Transplants were 50% autologous and 50% allogeneic. Median time of use was 104.1 minutes (6.4-256.2 minutes) over 29.5 days (21-68 days). Minutes used and days used were strongly inter-correlated (r=.90, p=0.001) and correlated with inpatient days (r=.70, p=0.05; and r=.81, p=0.01 respectively). The most time spent was in the laboratory module, followed by health care provider directory, medication, and phases of care modules (Table 1). Quantitative survey results showed that trait anxiety (STAI-T) was decreased, caregiver quality of life (CQOL) was improved, and caregiver activation (C-PAM) was increased at discharge compared with baseline (Table 2). The highest level of self-rated activation, as assessed by the C-PAM survey increased from 40% (admission) to 50% (discharge), and reached 85.7% (day 100). Total C-PAM score showed a strong trend toward increased activation from admission to day 100 (p=0.08). Caregivers with higher engagement had less trait anxiety at day 100 (r=.82, p=0.02), but engagement was unrelated to minutes of iPad use, days of iPad use, inpatient days, and caregiver quality of life. Caregivers described the iPad as easy to use and all used it for some portion of their stay (Table 3).

Conclusions: Our findings indicate that health IT tools adapted to specific clinical conditions have potential to increase caregiver activation. BMT Roadmap was highly useful and easy to use. Validated survey measurements indicated that trait anxiety was decreased, caregiver quality of life was improved, and caregiver activation was increased at discharge compared with baseline. Higher activation was associated with less anxiety at day 100, but unrelated to iPad use (time), inpatient days, caregiver depression, distress or quality of life. We are now expanding BMT Roadmap into the Adult BMT population.


No relevant conflicts of interest to declare.

Author notes


Asterisk with author names denotes non-ASH members.