P132 Redefining refractory disease in RA and adult polyarticular JIA: a Delphi consensus study
Bibliographic record
Abstract
Abstract Background/Aims Patients who do not achieve sustained low disease activity despite drug treatments are referred to as having refractory disease. However, usage of this term varies and often does not account for any discrepancy between inflammation and persistent symptoms, adult or juvenile onset nor differences between patients’ and healthcare professionals’ perspectives. The study aimed to explore and achieve consensus on a definition of refractory disease across healthcare professionals and patients, through a mixed-methods Delphi approach. Methods Three rounds of voting (one face-to-face nominal group (n = 13), and two online rounds (ns = 40 and 53)) were conducted, in conjunction with the National Rheumatoid Arthritis Society. Participants voted on the inclusion and relevance of statements to generate a broader definition of refractory disease, derived from previous qualitative interviews with multi-disciplinary healthcare professionals and patients (adult and juvenile onset), a systematic review of current definitions and health psychology theory. The process involved voting on: a) name preferences, b) treatment and inflammation statements, c) domains for inclusion regarding symptoms and impact, and d) rating of individual components within each domain, including relevance to: i) Refractory Arthritis and ii) Disease Flare for discriminatory validity. A predetermined cut off was applied to identify which domains needed to be included, until final consensus was reached. Full NHS ethical approval was granted (London-Hampstead-18/LO/1171). Results With minimal attrition (n = 3 in both online rounds), 106 international participants including Patient Representatives, Rheumatologists, Nurses, GPs, Psychologists, Physiotherapists, Researchers, Pharmacist, Podiatrist, Occupational Therapist and a Social Worker participated. Refractory Inflammatory Arthritis was the most popular name, (25% of votes) followed by Persistent Inflammatory Arthritis (19% of votes) hence its application in the presence (Persistent Inflammation) or absence (Persistent Symptoms) of inflammation as part of the definition. Regarding treatment and inflammation, these were voted in the majority to be kept broad rather than specifying rigid cut-offs. From the original 73 components across 10 domains identified to capture symptoms and impact, initial analysis has resulted in six domains reaching consensus for inclusion. These domains cover: 1) Disease Activity, 2) Joint Involvement, 3) Pain, 4) Fatigue, 5) Functioning and Quality of Life, and 6) cs/b/tsDMARD Experiences. Within these, 18 components were identified as related and important e.g. One or two persistently active/affected joints, Reduced mobility, Disease-related Distress, Inability to perform desired activities, Repeated need of short course steroids and Disease Activity not captured by DAS28. These capture the multi-faceted presentation and experience of Refractory Inflammatory Arthritis in these two populations. Conclusion A broader definition for refractory inflammatory arthritis has been generated through a Delphi method to capture the experiences of rheumatologists, patients and multi-disciplinary healthcare professionals. This definition needs further refinement and validation to assess clinical and research utility to identify high risk patients with unmet needs. Disclosure H. Chaplin: None. A. Bosworth: None. J. Meehan: None. R. Moss-Morris: None. H. Lempp: None. S. Norton: None.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.135 | 0.112 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.002 |
| Bibliometrics | 0.003 | 0.002 |
| Science and technology studies | 0.003 | 0.004 |
| Scholarly communication | 0.002 | 0.003 |
| Open science | 0.002 | 0.010 |
| Research integrity | 0.002 | 0.002 |
| Insufficient payload (model declined to judge) | 0.006 | 0.001 |
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 source (direct Gemma or distilled Codex), 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".