Patient-Provider Interventions to Improve Transition to Adult Care in SCD
Overview
- Phase
- N/A
- Intervention
- Not specified
- Conditions
- Sickle Cell Disease
- Sponsor
- Children's Hospital Medical Center, Cincinnati
- Enrollment
- 78
- Locations
- 1
- Primary Endpoint
- Change From Baseline on Disease Self-efficacy Measure at 6 Weeks
- Status
- Completed
- Last Updated
- 7 years ago
Overview
Brief Summary
The purpose of the study is to develop patient-provider clinical support tools to improve clinical practice, patient self-management, and disease outcomes in sickle cell disease during transition to adult care. The investigators hypothesize that these clinical support tools (patient tool, provider tool, and patient/parent web-based portal) will be feasible, user friendly, and beneficial. The investigators hypothesize that participants will demonstrate better disease self-efficacy at the end of the 6 week intervention and maintain these gains during the follow-up period (up to 1 year post-intervention).
Detailed Description
The purpose of the study is to develop patient-provider clinical support tools to improve clinical practice, patient self-management, and disease outcomes in sickle cell disease during transition to adult care.
Investigators
Eligibility Criteria
Inclusion Criteria
- •Have sickle cell disease (SCD)
- •Between the ages of 13 and 24
- •Receive care at Cincinnati Children's Hospital Medical Center, University Hospital, University of Cincinnati Med Peds Practice, a practice in the Ohio Valley SCD Network, or another local provider
- •Parent/caregiver of a patient with SCD age 13-24 years
Exclusion Criteria
- •Below age 13
- •Have significant health complication(s) that would interfere with completion of the intervention (by physician report)
- •Have significant cognitive or developmental disabilities (by parent or physician report) due to high demand on participants to understand questions
- •Are not a patient at Cincinnati Children's Hospital Medical Center, University Hospital, University of Cincinnati Med Peds Practice, a practice in the Ohio Valley SCD Network, or another local provider
- •Are not a parent/caregiver of a patient with SCD age 13-24 years
Outcomes
Primary Outcomes
Change From Baseline on Disease Self-efficacy Measure at 6 Weeks
Time Frame: baseline, 6 weeks (post-intervention)
Name of Measure: Sickle Cell Self-Efficacy Scale (SCSES). Construct: sickle cell self-efficacy (disease specific self-efficacy) 9 item measure of sickle cell disease self-efficacy (likert scale from 1 \[not at all sure\] to 5 \[very sure\]) developed by Edwards (see References). Responses on items are summed to compute a total score. Minimum score: 9 Maximum score: 45 Higher scores represent higher sickle cell self-efficacy (better outcome).