Abstract
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.
