Evaluating the Divide Between Patients’ and Physicians’ Perceptions of Adult-Onset Still’s Disease Cases: Insights from the PRO-AOSD Survey
Abstract
1. Introduction
2. Materials and Methods
2.1. Study Design and Patients
2.2. Assessments
2.3. Statistical Analysis
2.4. Patient and Public Involvement
2.5. Ethical Approval
3. Results
3.1. Patient Demographics
3.1.1. Time to Diagnosis
3.1.2. Disease Course
3.1.3. Current and Past Medication
3.2. Laboratory Findings
3.3. Physicians’ Treatment Goals
3.4. Physicians’ Assessments of Patients’ Health States
3.5. Pain, Disease Activity, and Symptoms
3.6. Disease Activity Determined by CRP Levels
3.7. Impact of External Factors on Disease Improvement
4. Discussion
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Abbreviations
| AID | Autoimmune disease |
| AOSD | Adult-onset Still’s disease |
| ALT | Alanine aminotransferase |
| AST | Aspartate aminotransferase |
| BMI | Body mass index |
| CRP | C-reactive protein |
| DAS28 | Disease Activity Score 28 |
| DMARD | Disease-modifying anti-rheumatic drug |
| ESR | Erythrocyte sedimentation rate |
| HRQoL | Health-related quality of life |
| N/n | Number of patients |
| NSAID | Non-steroidal anti-inflammatory drug |
| PRO | Patient-reported outcome |
| PRO-AOSD | Patient-reported outcomes adult-onset Still’s disease |
| SF-36 | Short Form-36 |
| sJIA | Systemic juvenile idiopathic arthritis |
| SD | Standard deviation |
| WPAI | Work Productivity and Activity Impairment |
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| Total | Male | Female | |
|---|---|---|---|
| N = 124 (100%) | n = 50 (40.3%) | n = 74 (59.7%) | |
| Age, years, mean (SD) | 45.5 (14.7) | 44.8 (13.6) | 46 (15.4) |
| Weight, kg, mean (SD) | 79.0 (19.1) | 89.4 (16.2) | 72.0 (17.7) |
| Height, cm, mean (SD) | 170.8 (9.9) | 179.3 (7.2) | 165.1 (6.8) |
| BMI, kg/m2, mean (SD) | 27.0 (5.8) | 27.8 (4.7) | 26.4 (6.3) |
| Smoker, n (%) | 18 (14.5) | 7 (14.0) | 11 (14.9) |
| Serum Ferritin (µg/L) | CRP (mg/L) | ESR (mm/h) | AST (IU/L) | ALT (IU/L) | Leukocyte Count (Gpt/L) | |
|---|---|---|---|---|---|---|
| Valid, n (%) | 88 (71.0) | 107 (86.3) | 77 (62.1) | 87 (70.2) | 107 (86.3) | 89 (71.8) |
| Missing, n (%) | 36 (29.0) | 17 (13.7) | 47(37.9) | 37 (29.8) | 17 (13.7) | 35 (28.2) |
| Median | 118.5 | 2.5 | 11.0 | 27.0 | 25.0 | 6.3 |
| Mean | 562.2 | 16.04 | 16.6 | 30.1 | 36.8 | 7.6 |
| SD | 1879.1 | 47.9 | 21.0 | 15.3 | 43.0 | 4.0 |
| Minimum | 5.0 | 0.0 | 2.0 | 0.0 | 0.0 | 3.1 |
| Maximum | 16,000.0 | 300.0 | 100.0 | 91.0 | 385.0 | 28.0 |
| Please Rate Whether You Have Noticed Any Influence of the Following Factors on Your Symptoms (N = 124) | Positive Influence, Noticeably Improves My Disease Symptoms, n, (%) | Negative Influence, Worsens Disease Symptoms, n, (%) | No Influence or Does Not Apply, n, (%) |
|---|---|---|---|
| More exercise or sport | 65 (52.4) | 18 (14.5) | 41 (33.1) |
| Fruit/vegetables | 39 (31.5) | 1 (0.8) | 84 (67.7) |
| Mediterranean diet | 32 (25.8) | 0 (0.0) | 92 (74.2) |
| Vegetarian/vegan diet | 25 (20.2) | 2 (1.6) | 97 (78.2) |
| Coffee/tea | 13 (10.5) | 6 (4.8) | 105 (84.7) |
| Smoke less | 10 (8.1) | 3 (2.4) | 111 (89.5) |
| Physical exertion | 8 (6.5) | 70 (56.5) | 46 (37.1) |
| Fruit juices | 7 (5.6) | 10 (8.1) | 107 (86.3) |
| Stress | 4 (3.2) | 92 (74.2) | 28 (22.6) |
| Infections (e.g., colds) | 3 (2.4) | 64 (51.6) | 57 (46.0) |
| Seasonal cold | 3 (2.4) | 68 (54.8) | 53 (42.7) |
| Sleep deprivation | 1 (0.8) | 78 (62.9) | 45 (36.3) |
| Increased meat consumption (e.g., daily sausage and meat) | 1 (0.8) | 30 (24.2) | 93 (75.0) |
| Fast food/finished products | 1 (0.8) | 29 (23.4) | 94 (75.8) |
| Sugary drinks (lemonade/cola) | 1 (0.8) | 22 (17.7) | 101 (81.5) |
| Alcohol consumption | 0 (0.0) | 31 (25.0) | 93 (75.0) |
| Hormonal fluctuations/monthly cycle | 0 (0.0) | 23 (18.5) | 101 (81.5) |
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Blank, N.; Andreica, I.; Rech, J.; Sözen, Z.; Feist, E. Evaluating the Divide Between Patients’ and Physicians’ Perceptions of Adult-Onset Still’s Disease Cases: Insights from the PRO-AOSD Survey. J. Clin. Med. 2025, 14, 7034. https://doi.org/10.3390/jcm14197034
Blank N, Andreica I, Rech J, Sözen Z, Feist E. Evaluating the Divide Between Patients’ and Physicians’ Perceptions of Adult-Onset Still’s Disease Cases: Insights from the PRO-AOSD Survey. Journal of Clinical Medicine. 2025; 14(19):7034. https://doi.org/10.3390/jcm14197034
Chicago/Turabian StyleBlank, Norbert, Ioana Andreica, Jürgen Rech, Zekayi Sözen, and Eugen Feist. 2025. "Evaluating the Divide Between Patients’ and Physicians’ Perceptions of Adult-Onset Still’s Disease Cases: Insights from the PRO-AOSD Survey" Journal of Clinical Medicine 14, no. 19: 7034. https://doi.org/10.3390/jcm14197034
APA StyleBlank, N., Andreica, I., Rech, J., Sözen, Z., & Feist, E. (2025). Evaluating the Divide Between Patients’ and Physicians’ Perceptions of Adult-Onset Still’s Disease Cases: Insights from the PRO-AOSD Survey. Journal of Clinical Medicine, 14(19), 7034. https://doi.org/10.3390/jcm14197034

