Empowering Adolescents and Young Adults With Sickle Cell Disease as Partners in Treatment Decision Making (EMPOWER-AYA)

NARecruitingINTERVENTIONAL
Enrollment

68

Participants

Timeline

Start Date

November 26, 2024

Primary Completion Date

November 30, 2025

Study Completion Date

November 30, 2025

Conditions
Sickle Cell Disease
Interventions
BEHAVIORAL

SCD Shared Decision-Making Toolkit for AYAs - including VR

The SCD Shared Decision-Making Toolkit for AYAs (SDMT-AYA) targets multi-level barriers to uptake of disease-modifying therapies by providing technology-enhanced tools for: 1) clinicians (i.e., training in motivational interviewing, values elicitation, and cultural humility); 2) AYAs and caregivers (i.e., user-centered multimedia decision aids, including virtual reality, online (videos, animations, articles), and print materials); and 3) implementation (e.g., clinic audit and feedback strategies).

BEHAVIORAL

SCD Shared Decision-Making Toolkit for AYAs - without VR

The SCD Shared Decision-Making Toolkit for AYAs (SDMT-AYA) targets multi-level barriers to uptake of disease-modifying therapies by providing technology-enhanced tools for: 1) clinicians (i.e., training in motivational interviewing, values elicitation, and cultural humility); 2) AYAs and caregivers (i.e., user-centered multimedia decision aids, including online videos, animations, and articles as well as print materials); and 3) implementation (e.g., clinic audit and feedback strategies).

Trial Locations (1)

19803

RECRUITING

Nemours Children's Hospital, Delaware, Wilmington

All Listed Sponsors
lead

Nemours Children's Clinic

OTHER