Objectives: Abdominal pain affects nearly 80% of youth with acute recurrent or chronic pancreatitis (ARP/CP), yet its broader burden is poorly understood. We characterized direct (healthcare utilization) and indirect (school absenteeism, parental work loss) burden in youth with painful ARP/CP and examined associations with pain characteristics and health-related quality of life (HRQOL). Methods: Youth with painful ARP/CP and caregivers were recruited from INSPPIRE sites and the community. Caregivers reported healthcare use and indirect burden via the Client Service Receipt Inventory. Youth completed validated measures of pain severity, pain interference, and HRQOL. Negative binomial and logistic regression assessed associations between pain, HRQOL, and disease burden. Results: Ninety youth (mean age 14.9) were included. Over 9 months, youth had a median of 1 hospital admission (3-day stay), 1.5 ED visits, 4 outpatient visits, 1 non-physician visit, 18.5 missed school days, and 6.0 parental workdays lost; one in six parents provided additional weekly childcare. Higher pain severity was associated with higher ED (+33%) and outpatient visits (+20%), more medication use (+35%), complementary and alternative medicine (CAM) use (+136%), and more school days missed (+48%). Higher pain interference was linked to more hospital admissions (+38%) and longer stays (+103%), greater outpatient (+21%), non-physician (+20%), CAM (+120%), medication use (+41%; opioids +138%), as well as more school (+100%) and parental workday loss (+133%). Higher HRQOL was associated with lower burden. Conclusions: Pediatric painful ARP/CP imposes substantial direct and indirect burden. Interventions targeting pain and disability may reduce healthcare use and improve functioning and family well-being.
Li et al. (Mon,) studied this question.