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

Patient-Provider Interventions to Improve Transition to Adult Care in SCD

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).

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.

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