Abstract
INTRODUCTION/OBJECTIVE: Lack of a well-characterized phenotype of High-Impact Chronic pain (HICP), that is, chronic pain (CP) with substantial restriction of participation in work, social, or self-care activities remains a critical gap in identifying individuals with CP and SCD at-risk for poor pain outcomes. METHODS: Retrospective study using the Electronic Health Record (EHR) at a large academic children's hospital. RESULTS: We report the clinical phenotype of 46 children with SCD diagnosed with HICP at time of consultation for Hematopoietic Cell Transplant (HCT). The mean age was 14.5 years (SD 3.9), 50% (n = 23) were female, 84.8% (n = 39) had HbSS genotype or similar, 30.4% (n = 14) had avascular necrosis, 84.8% (n = 39) were prescribed at least one disease modifying medication, and 41.3% (n = 19) were prescribed adjuvant analgesics. The cohort experienced a median of 6 (IQR 2, 9) and 8.50 (IQR 4.25, 15) episodes of healthcare utilization (HCU) for pain in 12 months and 24 months prior to the HCT consult, respectively, but about one-third did not experience frequent HCU (three or more episodes/year) for pain. In the 10 years leading up to the HCT consult, the incidence of HCU for pain year-over-year increased on an average by 15%. Clinical correlates of HICP from the EHR like prescription of adjuvant analgesics, cumulative doses of prescribed opioids, and diagnosis codes for CP were more likely to identify those who experienced frequent HCU for pain. CONCLUSION: HICP in SCD is associated with substantial morbidity. This study underscores the importance of screening for HICP in SCD.