Topic: Sickle Cell Disease


Improving Sickle Cell Transitions of Care Through Health Information Technology

Status: Complete

WHAT: The first phase of a project that aims to develop a technology-based tool to aid adolescents and young adults with sickle cell disease during transitions of care, including from outpatient to inpatient care and from pediatric-focused to adult-focused care. The purpose of Phase 1 was to understand if and how a technology-based tool can improve the health of individuals with sickle cell disease during care transitions and establish a set of requirements that can guide the design and development of this tool.

WHO: The project engaged 100 in 10 focus groups as well as one-on-one interviews with stakeholders including state Medicaid representatives and other relevant policy makers.

WHEN: August 2012 until May 2014

FUNDER: The project was funded by the US Department of Health and Human Services’ Agency for Healthcare Research and Quality (AHRQ). Partners for the project include healthcare consulting firm The Lewin Group, Children’s National Medical Center, Cincinnati Children’s Hospital Medical Center and the nonprofit children’s health organization Nemours.

NICHQ'S ROLE: Conducted IT developer focus groups, an environmental scan and wrote a final recommendations report, which incorporated the findings from all of the project partners’ focus group reports and the environmental scan.

Read the recommendations for tool development in the project report.


Sickle cell disease (SCD) is an inherited red blood cell disorder that affects around 100,000 people in the United States, largely individuals of African ancestry, but increasingly in Latino and other populations as well. Individuals with SCD experience painful episodes when their red blood cells morph into a crescent (“sickle”) shape and get stuck in small blood vessels. This blockage inhibits blood flow, which deprives tissues of oxygen and causes severe pain and tissue damage. SCD is characterized by chronic anemia, unpredictable episodes of pain and end-organ damage, and early mortality.