Empowering Adolescents and Young Adults With Sickle Cell Disease as Partners in Treatment Decision Making (EMPOWER-AYA)
- Conditions
- Sickle Cell Disease
- Registration Number
- NCT05383911
- Lead Sponsor
- Nemours Children's Clinic
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Not yet recruiting
- Sex
- All
- Target Recruitment
- 68
Inclusion Criteria:<br><br> - Patients diagnosed with SCD ages 15-25 years receiving treatment at Nemours and<br> their caregivers will be included. Patients must be deemed candidates for initiation<br> of one or more disease-modifying therapies by their SCD healthcare provider.<br><br> - Nemours SCD healthcare providers will also be included.<br><br> - English language fluency is a requirement for all participants.<br><br>Exclusion Criteria:<br><br> - Patients/ caregivers who previously participated in usability testing of the<br> intervention will be excluded.<br><br> - Patients will also be excluded if they have history of seizures, if their medical<br> status or cognitive functioning preclude completion of interviews, or if no legal<br> guardian is available to provide consent (for patients < 18 years).<br><br> - Providers still completing training will be excluded.
Not provided
Study & Design
- Study Type
- Interventional
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Acceptability of Intervention Measure (AIM);Patient/Caregiver Satisfaction Questionnaire;Feasibility of Intervention Measure (FIM);Participant Recruitment Rate;Shared Decision Making Questionnaire (SDM-Q-9);Disease-Modifying Therapy Knowledge Questionnaire
- Secondary Outcome Measures
Name Time Method Initiation of disease-modifying therapy