Patient-Provider Tools to Improve the Transition to Adult Care in Sickle Cell Disease
| Status: | Completed |
|---|---|
| Conditions: | Anemia |
| Therapuetic Areas: | Hematology |
| Healthy: | No |
| Age Range: | 13 - 24 |
| Updated: | 6/17/2018 |
| Start Date: | June 2011 |
| End Date: | August 2015 |
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).
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.
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
We found this trial at
1
site
3333 Burnet Avenue # Mlc3008
Cincinnati, Ohio 45229
Cincinnati, Ohio 45229
1-513-636-4200
Cincinnati Children's Hospital Medical Center Patients and families from across the region and around the...
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