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

Medical University of South Carolina (MUSC)

Status: Completed

Conditions: Sickle Cell Disease

Treatments: Behavioral: Voice Crisis Alert V2

Study type: Interventional

Funder types: Other

Identifiers

NCT03585543

Pro00062837

Details and patient eligibility

About

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)

Enrollment: 30 patients

Sex: All

Ages: 8 to 17 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• 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

Exclusion criteria

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

Trial design

Primary purpose: Supportive Care

Allocation: N/A

Interventional model: Single Group Assignment

Masking: None (Open label)

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30 participants in 1 patient group

Single group intervention arm

Experimental group

Treatment:

Behavioral: Voice Crisis Alert V2