Patient-Provider Tools to Improve the Transition to Adult Care in Sickle Cell Disease

Not Applicable

Completed

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.

Recruitment & Eligibility

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

Primary Outcome Measures

Name	Time	Method
Change From Baseline on Disease Self-efficacy Measure at 6 Weeks	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).

Secondary Outcome Measures

Name	Time	Method

Locations (1): Cincinnati Children's Hospital Medical Center
🇺🇸
Cincinnati, Ohio, United States
Cincinnati Children's Hospital Medical Center
🇺🇸Cincinnati, Ohio, United States