Adolescent, Caregiver, and Young Adult Perspectives of the Transition From Pediatric to Adult Care for Sickle Cell Disease: A Preliminary Evaluation of the Sickle Cell Disease Transition Program

CompletedOBSERVATIONAL
Enrollment

55

Participants

Timeline

Start Date

March 31, 2012

Primary Completion Date

March 31, 2014

Study Completion Date

March 31, 2014

Conditions
Sickle Cell Disease
Interventions
OTHER

Assessment

In this study, through the use of focus groups and questionnaires, we will identify perceptions of transition from pediatric to adult care, transition readiness, disease knowledge, and self-management skills, and assess components of the St. Jude Children's Research Hospital (SJCRH) Sickle Cell Disease Transition Program. Participants will participate in focus groups to discuss transition and transition-related concepts and evaluate components of the transition program. Additionally, participants will complete questionnaires about specific aspects of the transition program and about current disease knowledge and management skills.

Trial Locations (1)

38105

St. Jude Children's Research Hospital, Memphis

All Listed Sponsors
collaborator

Plough Foundation

UNKNOWN

collaborator

Health Resources and Services Administration (HRSA)

FED

lead

St. Jude Children's Research Hospital

OTHER

NCT01569971 - Adolescent, Caregiver, and Young Adult Perspectives of the Transition From Pediatric to Adult Care for Sickle Cell Disease: A Preliminary Evaluation of the Sickle Cell Disease Transition Program | Biotech Hunter | Biotech Hunter