Predictors and Outcomes in Patients With Sickle Cell Disease
Longitudinal Examination of Predictors and Outcomes of Sickle Cell Disease Healthcare Transition
2 other identifiers
observational
94
1 country
2
Brief Summary
Children with sickle cell disease (SCD) are living longer with the advent of medical advances such as prophylactic penicillin, chronic transfusion, and hydroxyurea. Despite greater longevity in SCD, the period following the transition from pediatric to adult care is critical; youth aged 18-30 years are at high risk for mortality and have high rates of healthcare utilization, leading to high healthcare costs. As such, health care transition (HCT) programs have been created to prepare patients for adult-centered care and subsequently, improve health outcomes. However, very few programs have been evaluated for effectiveness in achieving optimal health outcomes in SCD. This paucity of program evaluation is attributed to a lack of identifiable predictors and outcomes. Researchers at St. Jude Children's Research Hospital want to identify factors and patterns of successful HCT. This information will be used to develop approaches to best evaluate HCT interventions and identify areas of improvement of HCT programming. PRIMARY OBJECTIVE: Describe hospital utilization, treatment adherence, and health-related quality of life in a cohort of patients with sickle cell disease (SCD) who will transfer to adult care during the study period. SECONDARY OBJECTIVE: Examine the associations between various factors and health care transition (HCT) outcomes.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P50-P75 for all trials
Started Jul 2018
Longer than P75 for all trials
2 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
First Submitted
Initial submission to the registry
February 7, 2018
CompletedFirst Posted
Study publicly available on registry
February 13, 2018
CompletedStudy Start
First participant enrolled
July 31, 2018
CompletedPrimary Completion
Last participant's last visit for primary outcome
January 31, 2022
CompletedStudy Completion
Last participant's last visit for all outcomes
May 26, 2023
CompletedFebruary 6, 2026
February 1, 2026
3.5 years
February 7, 2018
February 4, 2026
Conditions
Keywords
Outcome Measures
Primary Outcomes (4)
Number of emergency room/hospital admissions in the previous 12 months
The primary objective will utilize data collected at age 19 years, 0 months (±2 months), the age participants will have transferred to adult care. This data will come from participants enrolled between the ages of 17 years, 0 months and 19 years, 0 months.
Once, at age 19
Percent of clinic visits completed in the previous 12 months
The primary objective will utilize data collected at age 19 years, 0 months (±2 months), the age participants will have transferred to adult care. This data will come from participants enrolled between the ages of 17 years, 0 months and 19 years, 0 months.
Once, at age 19
Percent hydroxyurea prescription refill rate
The primary objective will utilize data collected at age 19 years, 0 months (±2 months), the age participants will have transferred to adult care. This data will come from participants enrolled between the ages of 17 years, 0 months and 19 years, 0 months.
Once, at age 19
Health-related quality of life as assessed by the PedsQL
The primary objective will utilize data collected at age 19 years, 0 months (±2 months), the age participants will have transferred to adult care. This data will come from participants enrolled between the ages of 17 years, 0 months and 19 years, 0 months.
Once, at age 19
Eligibility Criteria
Participants who meet eligibility criteria and have a pre-existing relationship as a patient at St. Jude Children's Research Hospital.
You may qualify if:
- Diagnosis of sickle cell disease (all genotypes).
- Age 16.0 - 20.99 years at initial assessment.
- Primary language is English.
You may not qualify if:
- Participant unable to complete the questionnaires due to refusal, current acute illness (e.g., pain crisis), or significant cognitive impairment as judged by health care providers at the SCD clinic.
- Inability or unwillingness of research participant or legal guardian/representative to give written informed consent.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- St. Jude Children's Research Hospitallead
- Methodist Comprehensive Sickle Cell Centercollaborator
- University of Memphiscollaborator
- National Heart, Lung, and Blood Institute (NHLBI)collaborator
Study Sites (2)
Methodist Adult Comprehensive Sickle Cell Center
Memphis, Tennessee, 38104, United States
St. Jude Children's Research Hospital
Memphis, Tennessee, 38105, United States
Related Links
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Jerlym Porter, PhD, MPH
St. Jude Children's Research Hospital
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- PROSPECTIVE
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
February 7, 2018
First Posted
February 13, 2018
Study Start
July 31, 2018
Primary Completion
January 31, 2022
Study Completion
May 26, 2023
Last Updated
February 6, 2026
Record last verified: 2026-02