Hood, A; Nwankwo, C; Kidwell, K; Joffe, N; McTate, E; Crosby, L; (2019) Self-Management Intervention Improves Behavioral Activation in Adolescents and Young Adults with Sickle Cell Disease. Presented at: Society of Pediatric Psychology Annual Conference 2019, New Orleans, LA, USA.

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Abstract

Background: Sickle cell disease (SCD) is a genetic disorder characterized by the production of abnormal hemoglobin associated with significant medical challenges and a high risk for neurologic and cognitive morbidity. Disease complications can worsen in adolescence when adolescents must navigate complex medical regimens while caregivers are beginning to transfer responsibility for disease management. Medication adherence levels are low in this vulnerable population with minority race and economic disadvantage compounding risk. Behavioral activation or the knowledge, skills, and readiness to change has been shown to improve disease or self-management; but few interventions targeting behavioral activation have been evaluated in this population. The goal of the present study was to assess an innovative, technology-enhanced, group self-management intervention, SCThrive with the goal of increasing behavioral activation and self-management in adolescents and young adults (AYA) with SCD. / Methods: We conducted a small single-site, randomized control trial (N = 53) and hypothesized that the SCThrive intervention (six weekly group sessions – 3 in-person, 3 online) would be superior to attention control (6 weekly 15 – 20-minute individual educational phone calls) and would improve behavioral activation and self-management in adolescents and young adults with SCD (ages 13-21 years). To test our hypotheses, AYA with SCD completed the Patient Activation Measure (PAM-13) and the Transition Readiness Assessment Questionnaire (TRAQ-5) at baseline and post-treatment. / Results: In support of our hypotheses, the behavioral activation of AYA with SCD who received the SCThrive intervention (N = 26) increased from baseline (M = 42.42, SD = 6.36) to post-treatment (M = 45.81, SD = 5.13) compared to attentional control: (N = 27) at baseline (M = 43.14, SD = 8.22) and posttreatment (M = 42.41, SD = 9.65), F(1, 51) = 3.85, p = .055, = .07. In contrast, self-management behaviors did not differ between the groups from baseline to posttreatment, p > .05. / Conclusion: AYA with SCD showed increased behavioral activation after participation in our tailored SCThrive intervention; however, studies with larger populations and across clinics are needed. It is possible that the lack of difference in self-management between the groups is because increases in behavioral activation precede improvements in self-management. Thus, studies examining the long-term effects of SCThrive on self-management and other important health outcomes (e.g. quality of life, acute care visits, SCD symptoms) are recommended.

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