Training young adults as community health workers specializing in pediatric to adult health care transition to support emerging adults with sickle cell disease.

Background: Transition to adulthood is a vulnerable time for emerging adults (16-25 years of age) with sickle cell disease (SCD), as there is a seven-fold increase in mortality rates during the transition period. Emerging adults with SCD also have the highest rates of hospitalizations, emergency room visits, and hospital readmissions compared to other age groups. Community health worker (CHW) programs have been developed to address outcomes such as patient activation which includes an individual's knowledge, skill, and confidence for managing one's health and healthcare, quality of life, and healthcare utilization for patients with chronic illnesses.

Initial development of a questionnaire evaluating perceived benefits and barriers to pediatric clinical trials participation.

Objective: To evaluate perceived benefits and barriers to pediatric clinical trials participation to improve decision-making and enhance recruitment and retention among minority youth with chronic health conditions (sickle cell disease, asthma) and their caregivers.

Methods: A questionnaire was developed based on the social ecological model using input from medical experts and community-based public health organizations. Parallel caregiver, adolescent/young adult (AYA; 16-39 years old), and child (8-15 years old) versions were field tested.