Sickle cell disease (SCD) is an inherited blood disorder that primarily affects African-Americans. Episodic pain is the hallmark feature of SCD and the most frequent health complication. Pain affects children with SCD one out of seven days on average and leads to at least one hospitalization per year. Effective treatment of chronic pain is widely recognized as requiring combined biopsychosocial treatment;however, we lack knowledge of how to best implement pain treatment and disseminate efficacious treatments in SCD (and other disorders). Most pain episodes in SCD are treated at home and these episodes are overwhelmingly treated with medication alone. Cognitive-behavioral coping techniques have shown promise for improving pain management in SCD;however, there are a number of barriers to integrating cognitive-behavioral training into pain management. Many of these barriers can be overcome by making home-based practice of these skills more attractive and using technology to guide patients through the training with remote monitoring of treatment integrity. The goal of the present proposal is to conduct a randomized, feasibility study of a home-based training protocol that adds cognitive-behavioral pain management to the current standard of care treatment (pharmacotherapy) for children with SCD. We will compare this integrated biopsychosocial pain intervention (pharmacotherapy plus cognitive-behavioral intervention) to the current standard of care treatment (pharmacotherapy alone). The protocol provides home-based practice of pain management skills using portable handheld devices and tracking of the child's pain experience. The device and software being deployed has a high attractiveness to youths, guides participants through the protocol to promote adherence, and allows for daily electronic reports to be sent to the clinical research team regarding the child's pain experience and practice of coping skills. This feedback system allows implementers to efficiently detect problems with the devices and identify misunderstandings about the protocol. The proposed project is innovative because it efficiently increases the level support for developing pain management skills at home, provides timely and accurate feedback between patients and clinical scientists about treatment implementation, and furthers our understanding of how cognitive- behavioral intervention can promote adaptive coping in youths with SCD. The long term goals of this work are to conduct a large, multi-site efficacy study of a biopsychosocial pain management protocol and to disseminate a treatment manual and supporting materials (e.g., software) for the protocol.

Public Health Relevance

Pain episodes are very common in sickle cell disease and significantly decrease health-related quality of life for these children. Current pain management for sickle cell disease in the United States is poor and the disease has been historically underserved. The proposed project will test whether training youths with sickle cell disease in cognitive-behavioral coping skills improves pain management above and beyond the current use of pain medication only.

National Institute of Health (NIH)
National Heart, Lung, and Blood Institute (NHLBI)
Exploratory/Developmental Grants (R21)
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Behavioral Medicine, Interventions and Outcomes Study Section (BMIO)
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Werner, Ellen
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University of South Carolina at Columbia
Schools of Arts and Sciences
United States
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