Pilot of the Chronic Disease Self-Management Program for Adolescents and Young Adults With Sickle Cell Disease

J Adolesc Health. 2017 Jan;60(1):120-123. doi: 10.1016/j.jadohealth.2016.08.022. Epub 2016 Oct 25.

Abstract

Purpose: This study evaluated the feasibility of a group self-management intervention, the well-established Stanford Chronic Disease Self-Management Program (CDSMP), for adolescents and young adults (AYA) with sickle cell disease (SCD).

Methods: A total of 22 AYA participants with SCD, ages 16-24 years, completed self-efficacy and quality of life measures before the CDSMP, after, and 3 and 6 months later.

Results: This AYA cohort showed significant improvements in self-efficacy (primary outcome) after the intervention. Analyses of follow-up data revealed a medium effect of the CDSMP on patient activation 3 months post although this was not sustained. Participants were highly satisfied, but only 64% completed the program.

Conclusions: This study demonstrates that the CDSMP is acceptable and has the ability to improve self-efficacy. Additional research is needed to determine feasibility and evaluate health outcomes for AYA with SCD.

Keywords: Adolescents; Chronic illness; Intervention; Pediatric hematology; Self-management; Sickle cell disease; Young adults.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adolescent
  • Adult
  • Anemia, Sickle Cell / therapy*
  • Attitude to Health*
  • Chronic Disease
  • Cohort Studies
  • Feasibility Studies
  • Female
  • Follow-Up Studies
  • Humans
  • Male
  • Pilot Projects
  • Quality of Life / psychology
  • Self-Management / methods*
  • Self-Management / psychology
  • Young Adult