Characteristics of juvenile-onset recurrent respiratory papillomatosis in China, 2011-2021: a hospital-based nationwide study.

Objectives: To assess the demographic and clinical characteristics, treatment and health outcome, and economic burden of JoRRP in China.

Methods: We identified twelve hospitals mainly responsible for JoRRP management across China to enroll patients presenting for JoRRP between Jan 1, 2011, and Dec 31, 2021. Data were primarily extracted from medical records, and missing values were additionally collected through telephone or outpatient interviews by two researchers independently. We used counts (proportions) and median values (interquartile range, IQR) to describe data. We applied the Lorenz curve and the concentration index (C-index) to indicate the wealth-related and education-related inequalities in JoRRP.

Results: Of the 361 enrolled JoRRP patients, the median age at first diagnosis was 2.7 years (IQR: 1.5-5.0). During the 7.2-year median follow-up, we observed that 314 (87.0%) patients experienced relapse and 125 (38.0%) patients underwent aggressive clinical course. The median value for the estimated total economic costs per patient was 8717.5$ (IQR: 4700.6$-15359.1$) and the occurrence of catastrophic health expenditure was concentrated in families with low incomes and less-educated parents.

Conclusions: Chinese JoRRP patients experienced significant disease burden characterized by severe clinical symptoms and substantial economic costs. Strategic healthcare plans for JoRRP are needed for disease mitigation in China.