Improving Sickle Cell Transitions of Care Through Health Information Technology

Abstract

Introduction

Transitions between inpatient and outpatient care and pediatric to adult care are associated with increased mortality for sickle cell disease (SCD) patients. As accurate and timely sharing of health information is essential during transitions, a health information technology (HIT)-enabled tool holds promise to improve care transitions.

Methods

From 2012 through 2014, the team conducted and analyzed data from an environmental scan, key informant interviews, and focus groups to inform the development of an HIT-enabled tool for SCD patients’ use during care transitions. The scan included searches of peer-reviewed and gray literature to understand SCD patient needs, transition concerns, and best practices in mobile health applications, and searches of websites and online stores to identify existing transition tools and their features. Eleven focus groups consisted of four groups of SCD patients of varying ages (≥9 years); three groups of parents/caregivers of SCD patients; three groups of providers; and one with IT developers.

Results

In focus groups, patients and caregivers reported that the transition from home to the emergency department (ED) was the most challenging; the ED was also where transitions from pediatric to adult care usually occurred. Patients felt they were not taken seriously by unfamiliar ED providers, and their inability to convey their diagnosis, pain regimen, and detailed medical history while in significant pain hindered care.

Conclusions

The environmental scan did not reveal an existing suitable transition tool, but patients, parents, providers, and IT experts saw the potential and appeal of creating a tool to meet ED health information needs to improve care transitions.