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
Condition: Sickle Cell Disease
MeSH terms: Anemia, Sickle Cell
Study type: Observational

Summary: 
      Sickle cell disease (SCD) is a debilitating genetic disorder affecting 70,000-100,000
      Americans. It is frequently associated with very serious medical complications. For children
      with SCD, successfully transitioning to adult care is a vital step in ensuring continuity of
      care, managing their disease, and improving their health outcomes. Transition programs have
      been created to facilitate the transition process. However, few studies have assessed
      transition readiness and whether transition program components meet the transition needs of
      patients and families.

      The purpose of this study is to explore transitioning from pediatric care to adult care and
      to assess components of the SJCRH SCD Transition Program from three perspectives: adolescents
      with SCD, their caregivers, and young adults with SCD who have transitioned to adult care.
      Data collection methods will include focus groups, questionnaires, and checklists.
      Qualitative data analysis procedures will be used to examine the data.
    

Detailed description: 
      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.
    

Intervention name(s): Assessment
Intervention type(s): Other
Intervention description(s): 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.
Other intervention name(s): Focus Groups; Questionnaires
Observational model: Cohort
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        1. Adolescents with SCD (all genotypes) ages ≥ 12 years old and ≤ 18 years old and
             currently receiving services through the SJCRH Sickle Cell Disease Transition Program

          2. Caregiver of an adolescent with SCD who has resided with the adolescent for at least 2
             years prior

          3. Young adults with SCD (all genotypes) ages ≥ 18 years old and ≤ 30 years old who have
             transitioned to adult care
      
Keywords: Transition Program; Perspectives