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

Cincinnati Children's Hospital Medical Center

Status: Completed

Conditions: Sickle Cell Disease

Treatments: Behavioral: Patient Portal Intervention for Adolescents with SCD; Behavioral: Self-management intervention for Adolescents with SCD

Study type: Interventional

Funder types: Other

Identifiers

NCT02200510

5K07HL108720

Details and patient eligibility

About

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).

Full 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.

Enrollment: 78 patients

Sex: All

Ages: 13 to 24 years old

Volunteers: No Healthy Volunteers

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

Trial design

Primary purpose: Treatment

Allocation: Non-Randomized

Interventional model: Parallel Assignment

Masking: None (Open label)

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78 participants in 2 patient groups

Self-Management Group

Other group

Description:

Self-management intervention for Adolescents with SCD - 6 week self-management group

Treatment:

Behavioral: Self-management intervention for Adolescents with SCD

Patient Portal

Other group

Description:

Patient Portal Intervention for Adolescents with SCD - 6 week individual patient portal intervention

Treatment:

Behavioral: Patient Portal Intervention for Adolescents with SCD