Improving self-management in adolescents with sickle cell disease

Area of Science:

• Adolescent health
• Chronic disease management
• Behavioral science

Background:

• Sickle cell disease (SCD) presents significant challenges for adolescents, particularly during the transition of care management.
• Behavioral activation (BA) is crucial for self-management but lacks targeted interventions for SCD.
• Adolescents and young adults (AYA) with SCD require tailored support for disease management.

Purpose of the Study:

• To evaluate a technology-enhanced self-management intervention for AYA with SCD.
• To target key behavioral activation domains: disease knowledge, self-efficacy, motivation, and self-management skills.
• To assess the impact of the intervention on self-management capabilities in AYA with SCD.

Main Methods:

• Randomized controlled trial comparing two arms: SCThrive (group sessions, app) and SCHealthEd (phone education).
• SCThrive involved six weekly group sessions, a booster session, and a companion app for symptom tracking and peer connection.
• SCHealthEd consisted of six weekly phone calls focused on health education.
• Both groups completed baseline and posttreatment questionnaires on behavioral activation.

Main Results:

• The SCThrive group showed a clinically meaningful 8-point improvement in self-efficacy (medium effect size).
• Statistically significant improvement was observed in one self-management skill (health tracking) among SCThrive participants (P=.001, d=.71).
• No significant improvements were noted in the SCHealthEd group, suggesting the intervention's components were key.

Conclusions:

• Self-management interventions show potential for enhancing self-efficacy in AYA with SCD.
• Healthcare providers should focus on behavioral activation skills to bolster self-management in this population.
• Technology-enhanced approaches may be effective in supporting adolescents and young adults with chronic conditions like SCD.