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

St. Jude Children's Research Hospital

Status: Completed

Conditions: Sickle Cell Disease

Treatments: Other: Assessment

Study type: Observational

Funder types: Other; Other U.S. Federal agency

Identifiers

NCT01569971

U1EMC19331 (Other Grant/Funding Number)

XPD12-025 TRANSCD

Details and patient eligibility

About

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.

Full 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.

Enrollment: 55 patients

Sex: All

Ages: 12 to 30 years old

Volunteers: Accepts Healthy Volunteers

Inclusion criteria

• 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.
• Caregivers who have resided with the adolescent with SCD for at least 2 years prior.
• Young adults with SCD (all genotypes) ages ≥ 18 years old and ≤ 30 years old who have transitioned to adult care

Exclusion criteria

• Non-English speakers.
• Adolescents and young adults with sickle cell trait.

Trial design

55 participants in 3 patient groups

Adolescents

Description:

Adolescents with SCD (all genotypes) age 12 years old up to 18 years old and currently receiving services through the St. Jude Children's Research Hospital Sickle Cell Disease Transition Program.

Treatment:

Other: Assessment

Caregivers

Description:

Caregiver of an adolescent with SCD who has resided with the adolescent for at least two years prior.

Treatment:

Other: Assessment

Young Adults

Description:

Young adults with SCD (all genotypes) age equal to 18 years up to and equal to 30 years of age who have transitioned to adult care.

Treatment:

Other: Assessment