Development and Feasibility Testing of the Comfort Ability Program for Sickle Cell Pain: A Patient-Informed, Video-Based Pain Management Intervention for Adolescents With Sickle Cell Disease

摘要

Objective: Even with optimized medical care for the management of pain, many pediatric patients with sickle cell disease (SCD) report persistently high pain and have corresponding functional impairments. The Comfort Ability Program (CAP), a daylong pediatric pain management intervention, was adapted via a 4-phase knowledge translation process into a video-based intervention to specifically and flexibly address sickle cell pain (SCP). CAP for SCP introduces psychological and biobehavioral pain management techniques to adolescents with SCD and their parents or caregivers. A primary goal of our structured development process and feasibility testing was to ensure ease of access and delivery by addressing identified barriers to care that have historically limited widespread dissemination of evidence-based programs for patients with SCD. Method: The development of CAP for SCP was completed in 4 phases: (1) convening an expert panel to review the literature, discuss logistical and cultural barriers to care, and adapt the curriculum of a 1 -day pain management workshop to a video-based format that could specifically meet the needs of a SCD population; (2) conducting a pilot testing of content with patients and parents followed by semistruc-tured focus group discussion; (3) generating and producing the interactive video, audio materials, and corresponding workbook for intervention delivery; and (4) testing feasibility in both inpatient and outpatient clinics. Results: Results suggest that this intervention is highly acceptable to adolescents and parents and can be administered during an inpatient hospitalization or in conjunction with a routine outpatient appointment. Conclusion: CAP for SCP was created using an integrative approach to trans-lational science and adhering to patient centered research practices. The result is a supportive, psychoeducational intervention offering an introduction to CBT skills and strategies for SCP management. Further research on CAP for SCP is needed.