Improving self‐management in adolescents with sickle cell disease

• Published in: Pediatric blood & cancer 2020-10, Vol.67 (10), p.e28492-n/a
• Main Authors: Crosby, Lori E., Hood, Anna, Kidwell, Katherine, Nwankwo, Cara, Peugh, James, Strong, Heather, Quinn, Charles, Britto, Maria T.
• Format: Article
• Language: English
• Subjects: Adolescent; Adolescents; Adult; Anemia, Sickle Cell - therapy; AYA; disease knowledge; Disease management; Female; Follow-Up Studies; Health Knowledge, Attitudes, Practice; health motivation; Hematology; Humans; Male; Motivation; Oncology; patient activation; Patient Education as Topic - methods; Pediatrics; Prognosis; Quality Improvement; Quality of Life; Self Efficacy; Self-Management - methods; Self-Management - psychology; Sickle cell disease; Skills; Statistical analysis; Surveys and Questionnaires; Young Adult; Young adults
• ISSN: 1545-5009; 1545-5017
• DOI: 10.1002/pbc.28492

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.