Quality of Life in Adult Patients With SAPHO Syndrome and Chronic Nonbacterial Osteomyelitis, and Comparison to Chronic Rheumatic and Inflammatory Diseases
Bibliographic record
Abstract
OBJECTIVE: The health effects of SAPHO (synovitis, acne, pustulosis, hyperostosis, and osteitis) syndrome and chronic nonbacterial osteomyelitis (CNO) have not been well studied. We assessed health-related quality of life (HRQOL) in adults with SAPHO-CNO and performed a review of EQ-5D questionnaire outcomes among 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 visual analog scale (VAS). A focused scoping review was performed of EQ-5D-related outcomes among disease cohorts with phenotypic similarities to SAPHO-CNO. RESULTS: In the 138 participants with SAPHO-CNO, mean age was 37.7 (SD 15.0) years with a mean disease duration of 6.4 (SD 6.2) years. All subjects had musculoskeletal involvement (with 43% having spine involvement) and 46% had skin involvement. Mean 5-level EQ-5D index value was 0.75 (SD 0.16) and mean EQ-VAS was 63.0 (SD 21.0). Most patients were affected by pain/discomfort (86%), difficulty in carrying out usual activities (65%), and anxiety/depression (54%); over one-third reported problems in all 5 EQ-5D domains. These adults with SAPHO-CNO had similarly reduced EQ-5D and VAS values, and similar high proportion of perceived problems, as in other inflammatory disease cohorts. CONCLUSION: The HRQOL among adults with SAPHO-CNO is low, with more than half of patients experiencing greater impact on perceived pain, difficulty performing usual activities, and feelings of anxiety or depression. Future therapies should address the multidimensional nature of SAPHO-CNO, targeting HRQOL as a major outcome.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.000 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".