Barriers to Treatment Adherence for Pediatric Patients With Sickle Cell Disease and Their Families

This study systematically identified adherence barriers and strategies in 31 adolescents with sickle cell disease (SCD) and 71 caregivers. Qualitative data indicated that forgetting was the primary barrier and caregiver reminders were the primary strategies identified by both caregivers and adolescents. However, adolescents reported significantly more barriers for pain management (p < .01) than their caregivers. Caregivers and adolescents seem to experience similar as well as a few unique barriers and strategies across multiple components of the SCD treatment regimen. Multidisciplinary treatment teams have the opportunity to facilitate dialogue with patients and their families about adherence barriers and strategies.