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Self-Management for Youth Living with Sickle Cell Disease (SMYLS): A study protocol for a multisite randomized
Shannon Phillips1, Kaila Martin2, Alyssa M Schlenz3
1College of Nursing, Medical University of South Carolina, 99 Jonathan Lucas St., Room 516, Charleston, SC 29425, USA.
Contemporary Clinical Trials
|October 6, 2025
Summary
This study evaluates the SMYLS app to improve self-management in adolescents and young adults with sickle cell disease (SCD). The mHealth intervention aims to mitigate adverse events during the transition to adult care.
Area of Science:
- Adolescent medicine
- Health informatics
- Chronic illness management
Background:
- Adolescents and young adults (AYA) with sickle cell disease (SCD) experience significant health challenges during their transition to adult care.
- Barriers to care for AYA with SCD can lead to negative health outcomes, emphasizing the need for effective self-management strategies.
- The Self-Management for Youth Living with Sickle Cell Disease (SMYLS) application shows promise in improving SCD-specific self-management based on feasibility studies.
Purpose of the Study:
- To evaluate the effectiveness of the mHealth SMYLS application in improving self-management behaviors among AYA with SCD.
- To assess the potential for widespread implementation of the SMYLS intervention.
- To explore the influence of patient activation, socioenvironmental, and psychosocial factors on health outcomes in AYA with SCD.
Main Methods:
- A multisite, hybrid type 1 effectiveness-implementation randomized controlled trial involving 272 AYA with SCD and their caregivers.
- Participants randomized (1:1) to an intervention arm (SMYLS app + usual care) or a control arm (educational SCD app + usual care).
- Mixed-methods evaluation using surveys at multiple time points (1-12 months) and post-intervention interviews with participants and providers.
Main Results:
- Feasibility studies demonstrated promising results for the SMYLS application in improving self-management.
- The trial is designed to assess effectiveness, implementation potential, and influencing factors, with results pending.
- The study design allows for evaluation of patient activation's role in the intervention's success.
Conclusions:
- The SMYLS intervention has the potential to significantly inform the widespread adoption of mHealth self-management tools for AYA with SCD.
- Findings may offer broader applicability for trials involving youth with chronic illnesses facing similar care barriers.
- This research contributes to understanding engagement with mHealth self-management interventions in vulnerable populations.
