Improving self-management in adolescents with sickle cell disease

Pediatr Blood Cancer. 2020 Oct;67(10):e28492. doi: 10.1002/pbc.28492. Epub 2020 Jul 22.


Background: Sickle cell disease (SCD) is associated with significant medical challenges that often worsen in adolescence when caregivers are beginning to transfer responsibility for disease management. Behavioral activation (BA) is an important precedent to improvements in self-management and ultimately health outcomes; however, few interventions targeting BA have been developed for the SCD population. The goal of the present study was to evaluate a technology-enhanced self-management intervention for adolescents and young adults (AYA) with SCD targeting BA domains (ie, disease knowledge, self-efficacy, motivation, and self-management skills).

Design/methods: Participants were randomized to one of two study arms. SCThrive participants (N = 26) completed six weekly group sessions, an in-person booster session, and used a companion app (iManage) to record symptoms, progress on goals, and connect with other group members. Each SCHealthEd participant (N = 27) received six weekly phone calls on SCD-related and general health education topics. All AYA completed questionnaires assessing BA at baseline and posttreatment.

Results: Separate mixed ANOVA analyses to assess for the effects of group (SCThrive/SCHealthEd), time (baseline/posttreatment), and group × time interaction indicated that there was a clinically meaningful improvement (8-point change) in self-efficacy, with a medium effect size, P = .09, η2 = .06, and there was statistically significant improvement in one self-management skill (tracking health), P = .001, d = .71, among SCThrive participants.

Conclusions: The results support the potential for a self-management intervention to improve self-efficacy in AYA with SCD. Health care providers are encouraged to target BA skills to support self-management of AYA with SCD.

Keywords: AYA; disease knowledge; disease management; health motivation; patient activation; self-efficacy.

Publication types

  • Randomized Controlled Trial
  • Research Support, N.I.H., Extramural

MeSH terms

  • Adolescent
  • Adult
  • Anemia, Sickle Cell / therapy*
  • Female
  • Follow-Up Studies
  • Health Knowledge, Attitudes, Practice*
  • Humans
  • Male
  • Patient Education as Topic / methods*
  • Prognosis
  • Quality Improvement*
  • Quality of Life*
  • Self Efficacy*
  • Self-Management / methods*
  • Self-Management / psychology
  • Surveys and Questionnaires
  • Young Adult