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 day-long 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 semistructured 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 translational 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.
Implications for Impact Statement
Pain is a primary feature of sickle cell disease (SCD) and psychologically based interventions for pain management can help to reduce pain and improve function for patients with this disease. However, because of significant disparities in care there are few psychologically based interventions available, resulting in a critical need to create equitable resources. This study highlights a knowledge translation process that addresses research identified barriers in care in an underserved population. The result, a structured adaptation of the Comfort Ability Program (CAP) to a video-based intervention for adolescents coping with sickle cell pain (SCP), was deemed feasible and acceptable.
