N/A
Completed N=78
Patient-Provider Tools to Improve the Transition to Adult Care in Sickle Cell Disease
Source: ClinicalTrials.gov NCT02200510 ↗Enrolled (actual)
78
Serious AEs
0.0%
Results posted
Jun 2018
Primary outcomePrimary: Change From Baseline on Disease Self-efficacy Measure at 6 Weeks — 33.2; 33.09 units on a scale — p=0.575
Summary
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).
Outcome Measures
| Outcome | Result | p-value |
|---|---|---|
| PRIMARY Change From Baseline on Disease Self-efficacy Measure at 6 Weeks |
33.2; 33.09 | 0.575 |
Eligibility Criteria
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
Data sourced from ClinicalTrials.gov (NCT02200510). Outcome figures and adverse-event rates are extracted automatically from the registry's posted results and are provided for clinician reference, not as a substitute for the primary publication. Informational only — not medical advice.