Categories:
Supportive Hematological Disorders Studies
Diseases Treated:
Eligibility Overview:
This is a non-therapeutic study for patients at St. Jude Children’s Research Hospital and Methodist Adult Comprehensive Sickle Cell Center.
- Diagnosis of sickle cell disease (SCD)
- 16 to 20 years old
- English is primary language
-
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 these improvements, the period following the transition from pediatric to adult care remains critical. Young adults have a high risk for mortality and have high rates of healthcare utilization, raising healthcare costs.
Health care transition programs are designed to prepare these patients for adult-centered care and improve health outcomes. However, very few programs have been evaluated for effectiveness in achieving optimal health outcomes.
This study will use questionnaires completed by adolescent and young adult patients to identify factors and patterns of successful health care transition. The information will be used to develop approaches to best evaluate health care transition interventions and identify areas of improvement of health care transition programming.
Primary Objective
- Describe hospital utilization, treatment adherence and health-related quality of life in a patients with sickle cell disease who will transfer to adult care during the study period
Secondary Objective
- Examine the associations between various factors and health care transition outcomes
Eligibility Criteria
Inclusion criteria include:
- Diagnosis of sickle cell disease
- 16 to 20 years old
- English is primary language
Exclusion Criteria include:
- Unable to complete questionnaires
Study Design
Observational
Study Sites
St. Jude Children’s Research Hospital
Memphis, Tennessee -
About this study
Sickle cell disease (SCD) is the most common genetic red blood cell disorder in African Americans. Children with sickle cell disease experience chronic, severe pain and can develop life-threatening complications.
Thanks to new treatments, patients with SCD are living longer. However, they often find it tough to transition from pediatric to adult health care providers.
Health care transition programs help prepare patients for adult-centered care. These programs help adult patients with sickle cell disease improve their health and decrease the overall death rate.
In this study, researchers will follow a group of adolescents and young adults with sickle cell disease over a two-year period. Patients will complete surveys about SCD knowledge and disease management, general adjustment and quality of life to help researchers identify ways to improve the transition process.
Purpose of this clinical trial
The main goal of this study is to find out what a successful health care transition looks like and to look at connections between health care transition and factors such as hospitalizations, patients’ disease knowledge and general adjustment. Researchers also want to know how these factors change over time.
Eligibility overview
- Diagnosis of sickle cell disease
- 16 to 20 years old
- English is primary language
-
LEAP Quick View Sponsors St. Jude Children's Research Hospital ClinicalTrials.gov identifier NCT03431935 Trial Start Date February 2018 Estimated Enrollment 146 Study Type Observational Conditions Sickle cell disease Ages 16 to 20 years old Principal investigator Jerlym Porter, PhD, MPH Study Sites St. Jude Children's Research Hospital For a consultation or to discuss LEAPS St. Jude Physician/Patient Referral Office
1-888-226-4343
referralinfo@stjude.org
Contact
St. Jude Children’s Research Hospital
262 Danny Thomas Place
Memphis, TN 38105 USA
Voice: 1-888-226-4343 or 901-595-4055
24-Hour Emergency Access Pager: 1-800-349-4334
Email: referralinfo@stjude.org
The above information is intended to provide only a basic description about a research protocol that may be currently active at St. Jude. The details made available here may not be the most up-to-date information on protocols used by St. Jude. To receive full details about a protocol and its status and or use at St. Jude, a physician must contact St. Jude directly.