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
| Status: | Completed |
|---|---|
| Conditions: | Anemia |
| Therapuetic Areas: | Hematology |
| Healthy: | No |
| Age Range: | 12 - 30 |
| Updated: | 5/5/2014 |
| Start Date: | March 2012 |
| End Date: | March 2014 |
| Contact: | Jerlym Porter, PhD |
| Email: | info@stjude.org |
| Phone: | 866-278-5833 |
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.
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.
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.
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.
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.
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