Trial record 13 of 127 for:
Open Studies | "Anemia, Sickle Cell"
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
This study is currently recruiting participants.
Verified December 2012 by St. Jude Children's Research Hospital
Sponsor:
St. Jude Children's Research Hospital
Collaborator:
Plough Foundation
Information provided by (Responsible Party):
St. Jude Children's Research Hospital
ClinicalTrials.gov Identifier:
NCT01569971
First received: March 30, 2012
Last updated: December 7, 2012
Last verified: December 2012
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Purpose
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.
| Condition | Intervention |
|---|---|
|
Sickle Cell Disease |
Other: Assessment |
| Study Type: | Observational |
| Study Design: | Observational Model: Cohort Time Perspective: Prospective |
| Official Title: | 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 |
Resource links provided by NLM:
Further study details as provided by St. Jude Children's Research Hospital:
Primary Outcome Measures:
- Grounded theory qualitative analysis of data [ Time Frame: 1 day ] [ Designated as safety issue: No ]First, data will be prepared for qualitative analysis. Digital audio files from the focus groups will be transcribed verbatim and questionnaire data will be entered into an Excel data file. Second, focus group data will be qualitatively analyzed using the constant comparative process. A qualitative data analysis program, NVivo9 (Victoria, Australia) will be used to assist with this coding process.
| Estimated Enrollment: | 72 |
| Study Start Date: | March 2012 |
| Estimated Study Completion Date: | September 2013 |
| Estimated Primary Completion Date: | September 2013 (Final data collection date for primary outcome measure) |
| Groups/Cohorts | Assigned Interventions |
|---|---|
|
Adolescents
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.
|
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.
Other Names:
|
|
Caregivers
Caregiver of an adolescent with SCD who has resided with the adolescent for at least two years prior.
|
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.
Other Names:
|
|
Young Adults
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.
|
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.
Other Names:
|
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.
Eligibility| Ages Eligible for Study: | 12 Years to 30 Years |
| Genders Eligible for Study: | Both |
| Accepts Healthy Volunteers: | Yes |
| Sampling Method: | Non-Probability Sample |
Study Population
- 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
- Caregiver of an adolescent with SCD who has resided with the adolescent 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
Criteria
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.
Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT01569971
Contacts
| Contact: Jerlym Porter, PhD | 866-278-5833 | info@stjude.org |
Locations
| United States, Tennessee | |
| St. Jude Children's Research Hospital | Recruiting |
| Memphis, Tennessee, United States, 38105 | |
| Contact: Jerlym Porter, PhD 866-278-5833 info@stjude.org | |
Sponsors and Collaborators
St. Jude Children's Research Hospital
Plough Foundation
Investigators
| Principal Investigator: | Jerlym Porter, PhD | St. Jude Children's Research Hospital |
More Information
Additional Information:
No publications provided
| Responsible Party: | St. Jude Children's Research Hospital |
| ClinicalTrials.gov Identifier: | NCT01569971 History of Changes |
| Other Study ID Numbers: | XPD12-025 TRANSCD, 6 U1EMC19331-01-01 HRSA |
| Study First Received: | March 30, 2012 |
| Last Updated: | December 7, 2012 |
| Health Authority: | United States: Institutional Review Board |
Keywords provided by St. Jude Children's Research Hospital:
|
Transition Program Perspectives |
Additional relevant MeSH terms:
|
Anemia, Sickle Cell Anemia, Hemolytic, Congenital Anemia, Hemolytic Anemia |
Hematologic Diseases Hemoglobinopathies Genetic Diseases, Inborn |
ClinicalTrials.gov processed this record on May 16, 2013