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

Study Overview
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Brief Summary
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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
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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.

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

Conditions
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Sickle Cell Disease

Intervention / Treatment
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* Behavioral: Self-management intervention for Adolescents with SCD
* Behavioral: Patient Portal Intervention for Adolescents with SCD


Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Minimum Age: 13 Years
Maximum Age: 24 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Treatment
Allocation: Non-Randomized
Intervention Model: Parallel Assignment
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Other: Self-Management Group<br>Self-management intervention for Adolescents with SCD - 6 week self-management group | Behavioral: Self-management intervention for Adolescents with SCD<br>* Chronic Disease Self-Management Program<br>|
| Other: Patient Portal<br>Patient Portal Intervention for Adolescents with SCD - 6 week individual patient portal intervention | Behavioral: Patient Portal Intervention for Adolescents with SCD<br>* MyChart for SCD intervention<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Change From Baseline on Disease Self-efficacy Measure at 6 Weeks | 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). | baseline, 6 weeks (post-intervention) | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Adolescent, Anemia, Sickle Cell, Transition to Adult Care, Self Care, Personal Electronic Health Records, Young Adult, Disease Management, Physician-Patient Relations