Assessment of disease burden in 225 patients with SAPHO syndrome: a comprehensive study of clinical features and quality of life

PURPOSE: The primary objectives of this study were: (1) to describe the clinical characteristics and disease burden in a cohort of patients with SAPHO syndrome; (2) to evaluate the impact of SAPHO syndrome on quality of life using DLQI and HAQ; and (3) to identify independent risk factors associated with impaired quality of life. METHODS: We retrospectively analyzed clinical data from 225 SAPHO patients at two tertiary hospitals using Dermatology Life Quality Index (DLQI) and Health Assessment Questionnaire (HAQ) scores. Correlation and regression analyses identified factors influencing QoL and physical function. RESULTS: There was no significant correlation between bone pain location and total HAQ scores (P = 0.264); skin lesion types showed a significant correlation with DLQI scores (P = 0.039), and PPP was the main factor leading to impaired skin-specific quality of life.Patients were predominantly female (65.3%; mean onset age 35 ± 13 years). Palmoplantar pustulosis (92.9%) and sternoclavicular joint involvement (59.6%) were predominant. There is a statistically significant association between treatment type and DLQI score (P = 0.028), with a significant correlation with HAQ score (P = 0.05).Median DLQI was 17 (78.5% moderate-severe) and HAQ 0.12. Alcohol and education correlated with DLQI (P < 0.05), with education as an independent factor (P = 0.002). Duration and alcohol correlated with HAQ (P < 0.05), with alcohol as an independent factor (P = 0.036). CONCLUSION: SAPHO significantly impacts patients' quality of life, worsened by modifiable factors like alcohol and education; targeted interventions may improve prognosis.