A Self-Management Intervention for Youth With Sickle Cell Disease and Their Families: Phase I
NCT03069430 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 44
Last updated 2018-05-11
Summary
This study is being conducted to test an intervention for children and adolescents ages 8-17 years with sickle cell disease and their families. In the first phase of this study, key informant interviews are being conducted with health care providers and children ages 8-17 with sickle cell disease and their primary caregivers. Participants are asked to review the intervention and provide feedback that will inform revision to the intervention.
Conditions
- Anemia, Sickle Cell
Interventions
- BEHAVIORAL
-
SELFY (Self Management for Youth with SCD)
The intervention will be delivered via a mobile device (tablet) and consists of three components. 1. Education, will consist of continuous access to electronic educational resources on the SCD process, treatment, home management strategies, symptom prevention and management strategies. To address potential literacy barriers, an application that reads PDF files aloud will be downloaded onto devices. 2. symptom monitoring and tracking, will consist of an application for tracking and monitoring pain in SCD that also permits upload of symptom logs and text alerts to a health care provider. 3. caregiver-provider communication, consists of SMS messaging with a nurse who will: respond to alerts, monitor pain symptoms delivered via the mHealth application, and respond to text messages.
Sponsors & Collaborators
-
Medical University of South Carolina
lead OTHER
Principal Investigators
-
Shannon Phillips, PhD, RN · Medical University of South Carolina
Eligibility
- Min Age
- 18 Years
- Sex
- ALL
- Healthy Volunteers
- Yes
Timeline & Regulatory
- Start
- 2016-08-01
- Primary Completion
- 2017-03-31
- Completion
- 2017-03-31
Countries
- United States
Study Locations
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