Purpose: To determine the incidence of pain and the types of home pain management techniques used by children and adolescents with sickle cell disease (SCD) and their caregivers.
Patients and methods: Thirty-seven children and adolescents (ages 6-21 years) with SCD used a self-report pain diary twice daily to report their pain experience and its management for 6 months to 3 years. A total of 18,377 diary days representing 514 distinct pain episodes were analyzed.
Results: Pain related to SCD was reported on 2592 days and 2326 nights, with analgesic medication taken on 88% of days and 76% of nights. A single oral analgesic was used on 58% of these days. On the remaining days, multiple analgesics were used in a variety of combinations. More frequent analgesic dosing was reported on days with more intense pain. Pain relief was substantially better for analgesic combinations than for single analgesics, particularly for moderate to severe pain.
Conclusions: Pain went untreated on a modest number of days, and many patients relied on relatively ineffective single analgesics. Other patients and families appropriately used potent analgesic combinations in a time-contingent and intensity-dependent pattern. This study suggests that recurrent acute pain from SCD can be successfully managed at home with appropriate training and supervision, and suggests several areas for intervention to improve patient outcomes.