Pilot of the Chronic Disease Self-Management Program for Adolescents and Young Adults With Sickle Cell Disease

Abstract

PurposeThis study evaluated the feasibility of a group self-management intervention, the well-established Stanford Chronic Disease Self-Management Program (CDSMP), for adolescents and young adults (AYA) with sickle cell disease (SCD). MethodsA total of 22 AYA participants with SCD, ages 16–24 years, completed self-efficacy and quality of life measures before the CDSMP, after, and 3 and 6 months later. ResultsThis AYA cohort showed significant improvements in self-efficacy (primary outcome) after the intervention. Analyses of follow-up data revealed a medium effect of the CDSMP on patient activation 3 months post although this was not sustained. Participants were highly satisfied, but only 64% completed the program. ConclusionsThis study demonstrates that the CDSMP is acceptable and has the ability to improve self-efficacy. Additional research is needed to determine feasibility and evaluate health outcomes for AYA with SCD.