LEAPS: Understanding Sickle Cell Disease Transition to Adult Care

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