Self-Management for Youth Living With Sickle Cell Disease: SMYLS Multi-site Trial
Medical University of South Carolina
Summary
The purpose of this study is to find out whether a web-based intervention using a mobile app is helpful for teens and young adults with sickle cell disease (SCD) in learning how to care for and manage their symptoms.
Description
The purpose of this study is to test the effectiveness of and identify barriers and facilitators to the implementation of SMYLS, an mHealth intervention designed to facilitate self-management behaviors in adolescents and young adults (AYA) with sickle cell disease (SCD). Specifically, the investigators propose to determine the effect of the intervention on the primary outcome of self-management behaviors and the secondary outcomes of quality of life, transition readiness, healthcare utilization, and pain interference. In addition, the investigators will explore how patient activation moderates…
Eligibility
- Age range
- 14–21 years
- Sex
- All
- Healthy volunteers
- Yes
Inclusion Criteria: * documentation in the electronic health record of any type of SCD * owns mobile device compatible with the intervention * access to the internet Exclusion Criteria: * Plans to relocate outside of study site area in the next 12 months * Plans to transition to adult care in 12 months or less * Parent/caregiver or provider report of neurocognitive impairment that precludes ability to use intervention and participate in study * non-English speaking
Interventions
- BehavioralVoice Crisis Alert V2
The mHealth self-management intervention consists of the following components: 1) condition-specific electronic educational materials; 2) pain/symptom monitoring and tracking; 3) health history information documentation; 4) medication tracking; 5) secure messaging with a provider; 6) functioning monitoring and tracking; and 7) transmission of health information (graphs with recorded pain and functioning histories) to a provider.
- BehavioralElectronic educational materials
The control arm will receive enhanced usual care, which will consist of usual educational materials distributed at the clinic plus a version of the intervention (Voice Crisis Alert V2) that only includes the electronic educational materials.
Location
- Medical University of South CarolinaCharleston, South Carolina