Abstract

Sickle cell disease (SCD) is associated with significant health challenges that often worsen during adolescence. Living with SCD requires a substantial amount of self-management and mobile health (mHealth) holds considerable promise for assessing and changing behaviors to improve health outcomes. We integrated a mobile app as an adjunct to a group intervention (SCThrive) and hypothesized that more engagement with the mHealth app would increase self-management and self-efficacy for adolescents and young adults (AYA) with SCD. Twenty-six AYA ages 13-21 years (54% female; 46% HbSS genotype; all African-American/Black) received six weekly group sessions (three in-person, three online). Participants were provided with the mobile app (iManage for SCD) to record progress on their self-management goals and log pain and mood symptoms. The Transition Readiness Assessment Questionnaire (TRAQ-5) assessed self-management skills and the Patient Activation Measure (PAM-13) assessed self-efficacy at baseline and post-treatment. Logging on to the app more frequently was associated higher mood ratings (r = .54, CI[.18, .77], p = .006) and lower pain ratings (r = -.48, CI[-.77, -.02], p = .04). Regression analyses demonstrated that after controlling for scores at baseline, the number of logins to the app predicted self-management skills (p = .05, η2 = .17) and possibly self-efficacy (p = .08, η2 = .13). Our study findings indicate that it can be challenging to maintain engagement in mHealth for AYA with SCD, but for those who do engage, there are significant benefits related to self-management, self-efficacy, and managing pain and mood.

Highlights

  • Sickle cell disease (SCD) is associated with medical challenges that often worsen for adolescents and young adults (AYA) when caregivers begin to transfer responsibility for care

  • In a previous feasibility and acceptability study, AYA with SCD provided qualitative feedback that they would use mobile health (mHealth) and that it was beneficial for tracking health behaviors

  • We integrated the mHealth app into a group intervention (SCThrive) and hypothesized that more engagement with the mHealth app would result in increased selfmanagement and self-efficacy for AYA with SCD

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Summary

Introduction

Sickle cell disease (SCD) is associated with medical challenges that often worsen for adolescents and young adults (AYA) when caregivers begin to transfer responsibility for care. Previous research indicates that AYA with SCD often lack the ability, confidence, and skills to manage their disease effectively. As most AYA with SCD are “technology natives,” mobile health (mHealth) holds considerable promise for assessing and changing behaviors to improve health outcomes.

Results
Conclusion
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