Clinical phenotype of high-impact chronic pain in sickle cell disease at consultation for hematopoietic cell transplant

Introduction/Objective Lack of a well-characterized phenotype of High-Impact Chronic pain (HICP), ie, 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 (3 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.