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

Sickle Cell Disease Clinical Trial

— iTransition  

Official title:

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

Clinical Trial Details — Status: Completed

Administrative data

• NCT number: NCT02200510
• Other study ID #: 5K07HL108720
• Status: Completed
• Phase: N/A
• Start date: June 2011
• Est. completion date: August 2015

Study information

• Verified date: May 2018
• Source: Children's Hospital Medical Center, Cincinnati
• Contact: n/a
• Is FDA regulated: No
• Study type: Interventional

Clinical Trial 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).

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.

Recruitment information / eligibility

• Status: Completed
• Enrollment: 78
• Est. completion date: August 2015
• Est. primary completion date: August 2015
• Accepts healthy volunteers: No
• Gender: All
• Age group: 13 Years to 24 Years

Eligibility

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

Related Conditions & MeSH terms

• Anemia, Sickle Cell
• Sickle Cell Disease

Intervention

Behavioral:
• Self-management intervention for Adolescents with SCD
Chronic Disease Self-Management Program
• Patient Portal Intervention for Adolescents with SCD
MyChart for SCD intervention

Locations

Country	Name	City	State
United States	Cincinnati Children's Hospital Medical Center	Cincinnati	Ohio

Sponsors (1)

Lead Sponsor	Collaborator
Children's Hospital Medical Center, Cincinnati

Country where clinical trial is conducted

United States, 

References & Publications (5)

Crosby LE, Joffe NE, Dunseath LA, Lee R. Design Joins the Battle Against Sickle-cell Disease. Des Manage Rev. 2013 Summer;24(2):48-53. — View Citation

Crosby LE, Smith T, Parr WD, Mitchell MJ. The Community Engagement and Translational Research Speaker Series: An Innovative Model of Health Education. J Community Med Health Educ. 2013 Jul 24;3. pii: 1000227. — View Citation

Crosby, L. E., Joffe, N., Kalinyak, K., Bruck, A. & Joiner, C. H. (2013). Six-month data from a pilot self-management intervention for adolescents with sickle cell disease [Abstract]. Blood, 122(21), 1675.

Crosby, L.E., Hudepohl, M., Kalinyak, K., Britto, M., Goldstein, A., Brown, K., Culp, A., & Joiner, C. H. (2013). Impact of use of a disease-specific patient portal on transition readiness and quality of life in adolescents with sickle cell disease [Abstr

Edwards R, Telfair J, Cecil H, Lenoci J. Reliability and validity of a self-efficacy instrument specific to sickle cell disease. Behav Res Ther. 2000 Sep;38(9):951-63. — View Citation

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	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)