Quality of Life in Adult SAPHO and Chronic Nonbacterial Osteomyelitis and Comparison to Chronic Rheumatic and Inflammatory Diseases.

OBJECTIVE The health effects of SAPHO syndrome and chronic nonbacterial osteomyelitis (CNO) have not been well studied. We assessed health-related quality life (HRQOL) in adults with SAPHO-CNO and performed a review of EQ-5D outcomes amongst similar chronic rheumatic and inflammatory diseases. METHODS We enrolled patients in the first US-based SAPHO-CNO prospective registry and assessed their HRQOL using the EQ-5D index and EQ-5D VAS. A focused scoping review was performed of EQ-5D related outcomes amongst disease cohorts with phenotypic similarities to SAPHO-CNO. RESULTS In the 138 SAPHO-CNO participants, mean age (standard deviation) was 37.7 (15.0) years with a mean disease duration of 6.4 (6.2) years. All subjects had musculoskeletal involvement (44% having spine involvement) and 48% had skin involvement. Mean EQ-5D-5L index value was 0.75 (0.16) and mean EQ-VAS was 63.0 (21.0). Most patients were impacted by pain/discomfort (86%), difficulty in carrying out usual activities (65%) and anxiety/depression (54%); over one-third reported problems in all five EQ-5D domains. These SAPHO-CNO adults had similarly reduced EQ-5D and VAS values, and similar high proportion of perceived problems, as other inflammatory disease cohorts. CONCLUSION The HRQOL among adults with SAPHO-CNO is low, with more than half of patients experiencing an impact in perceived pain, performing usual activities, and feelings of anxiety or depression. Future therapies should target the multi-dimensional nature of SAPHO-CNO, targeting HRQOL as a major outcome.