11th revision of the International Classification of Diseases chronic primary pain diagnoses in children and adolescents: representation of pediatric patients in the new classification system

Abstract Chronic pain is common among children and adolescents; however, the diagnoses in the newly developed 11th revision of the International Classification of Diseases (ICD-11) chronic pain chapter are based on adult criteria, overlooking pediatric neurodevelopmental differences. The chronic pain diagnoses have demonstrated good clinical applicability in adults, but to date, no field study has examined these diagnoses to the most specific diagnostic level in a pediatric sample. The current study aimed to explore pediatric representation within the ICD-11, with focus on chronic primary pain. Healthcare professionals (HCPs) at a specialized pediatric pain center documented the symptoms of and assigned both ICD-10 and ICD-11 diagnoses to N = 402 patients. Using criteria-based computer algorithms, specific ICD-11 pain diagnoses were allocated for each documented pain location, with residual diagnoses (ie, “unspecified”) assigned if criteria were not (fully) met. Within the ICD-11, the algorithms assigned specific pain diagnoses to most patients (73.6%). In ICD-10, HCPs could not specify a diagnosis for 5.2% of patients; the ICD-11 algorithm allocated a residual chronic primary pain diagnosis in 51.2%. Residual categories were especially prevalent among younger children, boys, patients with headaches, and those with lower pain severity. Overall, clinical utility of the ICD-11 was high, although less effective for chronic back pain and headache diagnoses. The latter also exhibited the lowest agreement between HCPs and algorithm. The current study underscores the need for evidence-based improvements to the ICD-11 diagnostic criteria in pediatrics. Developing pediatric coding notes could improve the visibility of patients internationally and improve the likelihood of receiving reimbursement for necessary treatments through accurate coding.