Kudos to Nancy Crego, assistant professor, and her entire team for the submission of her NIH R01 application entitled: “Understanding At Home Pain Management for Intervention Development in Adolescents Diagnosed with Sickle Cell Disease." This proposal requests funding for a four-year period with a project start date of July 1, 2022.

Sickle Cell Disease (SCD) is a complex genetic blood disorder affecting 100,000 predominantly African Americans, in which painful, vaso-occlusive episodes cause severe recurrent acute pain that is difficult to manage. SCD pain is unpredictable and can lead to life threatening complications. Painful episodes begin as early as 6 months of age, increase in frequency with age and cause 60 to 70% of SCD patient hospital stays. Most pain episodes (95%) are managed at home. But there are no standardized pain action plans or resources focusing on home pain management for adolescents with SCD or their parents/caregivers. Tools facilitating early assessment and recognition of pain that support implementation of evidenced based pain management interventions by adolescents with SCD and their parents/caregivers at home are lacking. Mobile health applications (APPs) have been successfully used for pain assessment in adults with SCD and in children with treatment related cancer pain at home. However, a lack of understanding of SCD pain management needs and practices within the family unit (especially the home) have been identified as impediments to developing effective home pain management interventions. Pain reports by children with SCD and their parents/caregivers are linked to the child’s developmental level; with increasing pain severity and frequency reported as patients approach adolescence. Across developmental levels, patient and parent/caregiver perception of SCD pain management and control are associated with ratings of pain interference with daily activities. Thus, implementation of developmentally tailored pain management interventions for SCD patients and their parents/caregivers in early and late adolescence is ideal. 

The study aims are:
AIM 1: Describe adolescent and parent/caregiver experiences, knowledge and needs for home management of SCD pain.
AIM 2: Develop a Beta version of Pain Pal, an APP to deliver developmentally tailored at home pain action plans to adolescents with SCD and their parent/caregiver.
AIM 3: Determine feasibility and acceptability of the Pain Pal App, and design preferences of adolescents with SCD and their parent/caregiver.