The transition to adult medical care: Young adults with sickle cell disease, ages 18 to 22

Abstract

The purpose of the research presented here is to identify the challenges faced by young people with sickle cell disease, the primary concerns of the young adults related to the transition from pediatric care to adult care, and the transition-related services needed in Los Angeles County. To date, research regarding the needs of these young adults has focused on the opinions of their healthcare providers with little emphasis on the disease experiences and needs from the perspective of the young adults.

In-depth interviews with 20 young adults with sickle cell disease in Los Angeles County revealed compelling descriptions of how sickle cell disease affects life's domains such as school, work, relationships, the transition to adult-centered care and expectations for the future. Based on results of these interviews and research into transition programs for young adults with other chronic conditions, suggestions for the creation of a sickle cell disease transition program are made.