For sickle cell patients, health information technology holds promise to improve care transitions

Date Posted : July 11, 2016


New research featured in American Journal of Preventive Medicine

Living with sickle cell disease (SCD), a hereditary blood disorder (anemia) that affects more than 100,000 Americans, is extremely challenging. One such challenge is found during transitions between inpatient and outpatient care and from pediatric to adult care, as these transitions are associated with increased mortality for SCD patients. Because accurate and timely sharing of health information is essential during transitions, The Lewin Group set out to explore how a health information technology (HIT)-enabled tool holds promise to improve those transitions of care.

From 2012 through 2014, The Lewin Group — together with a team from Children’s National Medical Center in Washington, DC; Cincinnati Children’s Hospital Medical Center; The Nemours Foundation in Jacksonville, FL; and the National Initiative for Children’s Healthcare Quality in Boston — conducted a study 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 were conducted and 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.

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.

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.

Read the whole article, “Improving Sickle Cell Transitions of Care Through Health Information Technology,” which appears within “Developing a Unified Approach for Sickle Cell Disease,” a special supplement in the July 2016 issue of the American Journal of Preventive Medicine.