Institute for Patient-Centered Design, Inc.
Sickle Cell, a Lifelong
Evidence suggests a growing need for a formal transition plan for pediatric sickle cell patients preparing for adulthood. With an increased life expectancy, “sickle cell disease is now a chronic condition requiring comprehensive, life-long management (Kanter and Kruse-Jarres, 2013).” In addition, adults with sickle cell have notably different concerns than pediatric patients, including anxiety associated with mortality risks, treatment options, and potential disability. Previous reports that sickle cell adult patients experience lower health-related quality of life than other chronically ill patients have prompted new priorities for improvements in social and emotional support, quality of care, and the elimination of pain management stigmas (Treadwell, et al., 2014).
The dedicated care team at the MUSC Lifespan Comprehensive Sickle Cell Center helps both pediatric and adult patients and families manage their lifetime journey with this disease. In partnership with the Institute for Patient-Centered Design, the MUSC Center for Transformation will engage the 2018 Patient-Centered Design Innovation Summit’s participants in a design challenge to explore options for re-designing the sickle cell patient experience. Inspired by strategies used by MUSC’s Child Life Department to provide developmentally-appropriate interventions to MUSC’s pediatric patient population, six multi-disciplinary cohorts will brainstorm and collaborate on ideas to customize an experience for both adults and pediatric patients receiving care in the same clinic.