Medical care of sickle cell disease (SCD) has improved in recent years and the long-term prognosis for patients is now more favorable. Pain, however, continues to be a significant problem affecting children and adults with SCD. The frequency and severity of painful episodes is extremely variable among patients. Although disease severity accounts for some of the variability, medical data alone cannot explain all the variation. Newly developed behavioral methods have advantages for assessing how individuals cope with pain, however, these methods have not been widely applied in the analysis of SCD pain. The goal of this research project is to develop improved methods for assessing and treating SCD pain. Using methods piloted in preliminary research, this project will evaluate pain coping strategies in SCD patients. These methods include: 1) a Coping Strategies Questionnaire, and 2) a structured interview to assess pain, activity level, and health care utilization during painful episodes. Data will be collected at baseline and 9 and 18 month follow-ups. Data will be analyzed: 1) to assess the frequency that various pain coping strategies are used by patients with SCD, and 2) to determine the extent to which pain coping strategies predict patients' pain and response to pain above and beyond effects due to medical and demographic variables. This latter aim will help identify effective versus ineffective pain coping strategies in this population. Two studies are planned: Study 1 with adults, and Study 2 with children and adolescents. At the completion of year 5, data are expected on 100 adults and 60 children and adolescents. At the completion of year 5, data are expected on 100 adults and 60 children and adolescents. Several significant benefits are expected from this research. First, the information gathered may help health care professionals identify maladaptive coping strategies in their patients, and enable them to advise patients and their families about the relationship of these strategies to pain. Patients at risk for developing problems in adjustment to pain could be identified and preventive efforts planned. Second, the identification of effective pain coping strategies could help design behavioral treatment interventions. The future objective of this research program is to use the findings of this project to design behavioral interventions for SCD pain management.
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