Longitudinal Examination of Predictors and Outcomes of Sickle Cell Disease Healthcare Transition

About the study

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.

Study point of contact

Jerlym Porter, PhD, MPH
866-278-5833
referralinfo@stjude.org

Locations

2 United States sites

Age

16 to 20 Years

Study type

Observational

Gender

All

Compensation

Unknown

participation requirements

– Diagnosis of sickle cell disease (all genotypes).

– Age 16.0 – 20.99 years at initial assessment.

– Primary language is English.

participation restrictions

– 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.

Locations

  • Memphis, Tennessee, United States, Methodist Adult Comprehensive Sickle Cell Center, 38104 [Recruiting]
  • Memphis, Tennessee, United States, St. Jude Children's Research Hospital, 38105 [Recruiting]
Last updated 2021-02-10