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Completed

NCT Number: NCT02200510

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

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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Key information

Conditions

Sickle Cell Disease Anemia Anemia, Hemolytic Anemia, Hemolytic, Congenital Anemia, Sickle Cell Congenital, Hereditary, and Neonatal Diseases and Abnormalities Genetic Diseases, Inborn Hematologic Diseases Hemic and Lymphatic Diseases Hemoglobinopathies

Age range

13 year–24 year

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

Cincinnati Children's Hospital Medical Center

Cincinnati, Ohio, 45229, United States

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Self-management intervention for Adolescents with SCD

Behavioral

Chronic Disease Self-Management Program

Patient Portal Intervention for Adolescents with SCD

Behavioral

MyChart for SCD intervention

Primary outcomes

  1. Change From Baseline on Disease Self-efficacy Measure at 6 Weeks

    Time frame: baseline, 6 weeks (post-intervention)

    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).

Sponsors and collaborators

Lead sponsor

Children's Hospital Medical Center, Cincinnati

Other

Registry information

Official study title

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

Acronym: iTransition

Important dates

Study start
2011
Primary completion
2015
Study completion
2015
First posted
Jul 25, 2014
Registry last updated
Jun 15, 2018

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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