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.
| Jerlym Porter, PhD, MPH | |
| 866-278-5833 | |
| [email protected] |
46 United States sites
16 Years - 20 Years
Observational
All
Diagnosis of sickle cell disease (all genotypes).
Age 16.0 – 20.99 years at initial assessment.
Primary language is English.
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.