Sickle cell disease (SCD) affects more than 50,000 Americans, primarily those of African origin, making it the most prevalent of genetic conditions in the U.S. Pain is the most common reason for admission to the E.R. and hospital, and accounts for the majority of days missed from school. Sickle cell disease is a costly illness for the child, family and the health care delivery system.
The specific aims of this study are to examine the effectiveness of 1) an education and a pharmacologic protocol; 2) a cognitive-behavioral pain management program; and 3) an art therapy support program for children and adolescents in reducing the pain and its effects on functioning for children and adolescents with sickle cell disease. Participants include children (ages 7-12) and adolescents (13-18 years), who have been diagnosed with SCD, who have had 1 or more hospitalizations, 2 or more ER visits, 4 or more clinic visits, or missed 10 o more days from school related to pain from SCD in the past 12 months. All children and adolescents in the study will attend a 4 week class on education for living with SCD and analgesia. Participants will be matched on incidence of pain episodes and school attendance over the last 12 months and then randomly assigned to one of three groups: attention-control (AC), cognitive-behavioral techniques for pain (CBT-P) and art therapy (ART). The effectiveness of these interventions will be assessed via measurement of coping behaviors, the child/adolescent's experience of pain, their ability to function with pain and health care utilization during the intervention period of 8 weeks and for 48 weeks thereafter. Analysis of variance and covariance techniques will be used to test for group differences.
| Jones, F C; Broome, M E (2001) Focus groups with African American adolescents: enhancing recruitment and retention in intervention studies. J Pediatr Nurs 16:88-96 |
