Sickle cell disease (SCD) is an autosomal recessive disorder affecting over 100,000 individuals in the US. Individuals with SCD often experience chronic pain as well as acute, unpredictable pain episodes requiring healthcare visits and hospitalizations. As adolescents with SCD transition into adulthood, they must be ready to competently self-manage their condition if they are to optimize health and health-related quality of life. Therefore, it is important to provide these adolescents (age 13-17 years) and their primary caregivers, most often mothers, with the tools to prepare for transition. In this proposed 2-year pilot study, we will evaluate the effectiveness of Project Sickle CIA (Cultivating Informed Activated Adolescents), a 5-week web-based intervention that addresses both the self-care management needs of adolescents with SCD and the significant role of mothers in cultivating competent emerging young adults.
Our specific aims are to: (1) determine the feasibility (delivery, acceptability, and use) of the Project Sickle CIA intervention and (2) obtain preliminar estimates of the efficacy of the Project Sickle CIA intervention in improving adolescent outcomes in activation, health-related quality of life, and self-efficacy and maternal caregiver outcomes in activation, health-related quality of life, and maternal worry from pre to post intervention. The proposed study will use a non-randomized, prospective, longitudinal design with outcomes for both members of the adolescent-mother dyad, where 20 dyads will complete the 5-week intervention. Feasibility and acceptability will be measured by participation in website activities and feedback gained during post- intervention individual interviews. The effectiveness of the intervention will be tested using multilevel linear mixed effects models for modeling each longitudinal outcome measured on both adolescent and mothers.
As adolescents with sickle cell disease (SCD) transition into adulthood, they must be ready competently to self-manage their condition if they are to optimize health and health-related quality of life. This web-based intervention is designed to improve health outcomes in adolescents with SCD and their mothers by enhancing knowledge, skills, and confidence in effective self-management of the adolescent's life-long chronic illness. If this pilot test supports that the intervention is feasible and provides beginning evidence of efficacy, the potential impact is to provide an additional web-based self-care management resource that families with SCD can use to live better with SCD- a chronic disease that most often affects a vulnerable, minority population.
