Self-Management for Youth and Families Living With SCD - SMYLS

Completed · Not applicable

Conditions studied: Sickle Cell Disease

In brief

The purpose of this proposal is to integrate family-centered self-management strategies with mobile health (mHealth) technology to improve reach, self-management behaviors, and child and caregiver physical and psychosocial symptoms and quality of life. Specifically, the investigators propose to conduct feasibility testing of SMYLS, which has been adapted based on user feedback in the first phase of this study. First the investigators will work with the Medical University of South Carolina (MUSC) Pediatric Sickle Cell Clinic to identify and recruit families with children with sickle cell disease (SCD) in the community, statewide. Next, the investigators will test the feasibility of the intervention with 30 dyads of children ages 8 - 17 with sickle cell disease and their parent or primary caregiver, (N=60)

Key facts

Study ID

NCT03585543

Run by

Medical University of South Carolina

People needed

30

Starts

2018-03-16

Expected to finish

2019-01-31

Last updated by the study team

2020-11-19

Who can join

Age: 8 and older, up to 17. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• children ages 8 - 17 years and parent or primary caregiver 18 years or older
• child with sickle cell disease, as reported by clinician at MUSC Pediatric Sickle Cell Clinic

You may not qualify if…

• Parent/caregiver or child with cognitive disability or delay that precludes ability to participate
• Lack of wi-fi access

Where it is running

• Medical University of South Carolina — Charleston, South Carolina, United States

Full record on ClinicalTrials.gov

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