iCanCope with Sickle Cell Disease

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Project Summary Pain related to sickle cell disease (SCD) is most often treated in the home by patients and families, but this management is typically suboptimal. SCD mostly affects people of African descent. This population is known to suffer many racial and cultural inequities related to the medical management of SCD pain. Cognitive- behavioral therapies (CBT) that promote pain self-management can lead to symptom reduction, improved quality of life, and decreased healthcare use. However, most people with SCD do not receive CBT-based treatment due to barriers such as poor accessibility, limited availability of professionals, and high costs. Youth with SCD must assume more responsibility for managing their SCD pain, which typically becomes more chronic in adulthood. However, many youth never develop these important self-management skills during childhood and are poorly prepared to cope with SCD pain as adults. There is a critical need for innovative pain self-management programs that are accessible and tailored for youth with SCD pain. Access to web and mobile technologies among African Americans is high. In a qualitative study conducted by our group, youth with SCD, parents, and healthcare professionals indicated that these technologies could be applied to meet their pain self-management needs. Based on our team experiences in developing and testing web- and mobile- based pain management programs in other populations, we hypothesize that this approach will also be effective for delivering pain self-management to youth with SCD. In this application, our goal is to improve pain self-management and functioning in youth (aged 12-18) with SCD by developing and testing a tailored web and smartphone-based application (iCanCope with SCD). First, we plan to apply a user-centered design approach to refine and beta test the program. The program will include: (I) goal setting, (II) peer-based social support, and (III) pain self-management training. Second, we will determine program feasibility and initial program effectiveness through a pilot three-site randomized controlled trial. Preliminary effectiveness will be determined in 160 youth randomized to treatment compared to attention control. We hypothesize that youth who receive iCanCope with SCD will achieve greater reduction in pain intensity, pain-related disability and increased adaptive coping strategies (primary outcomes) as well as significant improvement in physical and emotional functioning and health-related quality of life (secondary outcomes) at post-treatment and 6-month follow-up compared to youth who receive the attention-control condition. Third, we will explore moderators and mediators of treatment effect. This project represents a significant advance in delivering tailored psychological therapies for youth with SCD. Our long-term goal is to develop effective and flexible treatments that can be delivered at low cost to reduce SCD pain and disability, and better equip youth to cope with SCD as adults.