Identifying unmet informational needs in the inpatient setting to increase patient and caregiver engagement in the context of pediatric hematopoietic stem cell transplantation

Abstract

Pediatric HSCT caregivers and patients have multiple informational needs that could be met with a health information technology system that integrates data from several sources, including electronic health records. Meeting these needs could reduce patients' and caregivers' anxiety surrounding the care process; reduce information asymmetry between caregivers/patients and providers; empower patients/caregivers to participate in the care process; and, ultimately, increase patient/caregiver engagement in the care process.

User-Centered Design Groups to Engage Patients and Caregivers with a Personalized Health Information Technology Tool

“…With regards to content, there was strong emphasis on psychosocial and emotional needs and participants pointed to areas where that information could be provided in the tool, consistent with our prior work. 27,28 The study team plans to incorporate these patient-generated issues as probes for future studies on the HCT inpatient experience and explore ways in which future iterations of the BMT Roadmap system could support tailored personalized health information and social support.…”

“…The HCT population, in particular, could benefit from such innovative technologies to support their healthcare given the immense challenges that patients and caregivers face, both clinically and emotionally. 26–28 HCT patients and caregivers experience significant distress at the time of discharge. 33 Unfortunately, effective strategies that could better prepare and transition patients to self-manage their disease conditions from the inpatient to outpatient settings have been underdeveloped.…”

“…In Phase 1, an experimental paper-based prototype of a health IT tool, the BMT Roadmap, was developed in 2014. 28 In Phase 2 (the present study) two Design Groups were conducted with patients and caregivers in March and April 2015 using low fidelity and high fidelity prototypes, respectively (Figures 2 and 3). In Phase 3, a pilot, exploratory study, “Personalized engagement tool for pediatric BMT patients and caregivers,” funded by the Agency for Healthcare Research and Quality and registered on ClinicalTrials.gov NCT02409121, will examine the use of a patient- and caregiver-controlled, web-based inpatient portal, the BMT Roadmap, in the inpatient HCT setting.…”

“…26–28 Based on formative evaluations, basic requirement studies, and insights gained from semi-structured qualitative interviews with patients, caregivers, nurses, pharmacists, nutritionists, advanced practice nurses, and physicians, 26–28 we developed an experimental paper-based prototype of a health IT tool, the BMT Roadmap (Figure 1). 28 Our goal was to develop a tool that could be used in the real-world, daily practice of HCT patients and caregivers (users) in the inpatient setting. The BMT Roadmap is a portable, tablet-based platform (Apple® iPad) for patients and caregivers to visualize real-time: 1) laboratory results (Labs) and medications (Meds); 2) patient-specific clinical trial and signed informed consent data; 3) health care provider profiles; and 4) discharge criteria checklist.…”

Design considerations for family-centered health management

“…In the pediatric context, the caregiver often takes primary responsibility for illness management rather than a shared responsibility with the patient [5]. Since parents usually take responsibility as a caregiver, parents of pediatric patients are required to take on new rhythms of their everyday life [4]. These adjustments often involve dealing with multi-faceted medical care, including management of activities of daily living (ADLs), medications, and central line care, or transportation on behalf of patients.…”