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

Study Results

Results available

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Basic Information

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Recruitment Status

COMPLETED

Clinical Phase

NA

Total Enrollment

78 participants

Study Classification

INTERVENTIONAL

Study Start Date

2011-06-30

Study Completion Date

2015-08-31

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).

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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.

Conditions

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Sickle Cell Disease

Study Design

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Allocation Method

NON_RANDOMIZED

Intervention Model

PARALLEL

Primary Study Purpose

TREATMENT

Blinding Strategy

NONE

Study Groups

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Self-Management Group

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

Group Type OTHER

Self-management intervention for Adolescents with SCD

Intervention Type BEHAVIORAL

Chronic Disease Self-Management Program

Patient Portal

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

Group Type OTHER

Patient Portal Intervention for Adolescents with SCD

Intervention Type BEHAVIORAL

MyChart for SCD intervention

Interventions

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Self-management intervention for Adolescents with SCD

Chronic Disease Self-Management Program

Intervention Type BEHAVIORAL

Patient Portal Intervention for Adolescents with SCD

MyChart for SCD intervention

Intervention Type BEHAVIORAL

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

Minimum Eligible Age

13 Years

Maximum Eligible Age

24 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No