Key Findings
- Purpose
To characterize the clinical phenotype of HICP among children and adolescents with SCD referred for HCT consultation, including pain frequency, healthcare utilization (HCU), analgesic exposure, and comorbidities such as AVN. - Population
Forty-six individuals with SCD (mean age 14.5 ± 3.9 years; 50% female), most with HbSS or similar genotypes (84.8%), who presented for HCT consultation at a single center. - Headline Result
The cohort demonstrated substantial pain burden: 65% had ≥3 pain-related healthcare visits in the previous year; median HCU was 6 visits (IQR 2–9) over one year and 8.5 (IQR 4.3–15) over two years. Avascular necrosis was documented in 30%. Nearly all patients (≥93%) had used short-acting opioids, and 41% had received adjuvant analgesics. Patterns of healthcare use varied, indicating heterogeneity in chronic pain expression even within a referred HICP cohort. - Why It Matters
This referred cohort demonstrates that children and adolescents presenting for HCT evaluation may experience complex, high-burden chronic pain with significant functional implications and high healthcare utilization. These findings underscore the importance of structured chronic-pain assessment, multidisciplinary pain management, and careful evaluation of pain trajectories during transplant decision-making. - Evidence Gaps & Limitations
Single-center retrospective data, potential referral bias (patients already selected for HCT consultation), reliance on EHR documentation for HICP classification, absence of patient-reported outcomes, and inability to compare with non-referred SCD populations.
Source: Journal of Sickle Cell Disease — “Clinical phenotype of high-impact chronic pain in sickle cell disease at consultation for hematopoietic cell transplant.”
Regulatory & Guideline Watch
Current SCD guidelines emphasize management of acute pain in vaso-occlusive crisis but offer limited guidance on identifying or managing high-impact chronic pain in pediatric or adolescent populations. This study highlights the value of integrating standardized chronic-pain assessment tools into care pathways, particularly in specialty evaluations such as HCT.