P162 Investigating triggers, preventers, and progression of symptoms in flares of systemic autoimmune rheumatic diseases: a mixed methods study
Bibliographic record
Abstract
Abstract Background/Aims The INSPIRE (Investigating Neuropsychiatric Symptom Prevalence and Impact in Rheumatology patient Experiences) study found a high self-reported prevalence of neuropsychiatric symptoms. Identification of patterns of prodromal and during flare symptoms could assist in earlier identification and treatment of impending flares. Patterns of symptom progression can be challenging to identify in clinic, particularly due to time constraints and neuropsychiatric symptoms being highly under-reported by patients and under-estimated by clinicians. The INSPIRE study highlighted the importance of giving a higher value to patient experiences and symptom interpretation. In the next phase of the INSPIRE study, we are: 1)Analysing the patterns (both within and between-patient) of prodromes and progression of neuropsychiatric and other organ system symptoms in systemic autoimmunerheumatic diseases (SARDs); 2) Investigating different triggers and “preventers/reducers” of flares; 3) Exploring how patients identify their personal triggers, preventers, prodromes and progression of symptoms in a flare, and whether/how this identification helps them, and their clinicians, manage flares. Methods Working in full partnership with SARD patients, informed by existing literature and the first INSPIRE cohort, we have devised a survey which asks about experiences of a wide-ranging list of triggers, preventers and prodromes. In addition to the - previously often overlooked - neuropsychiatric symptoms identified in INSPIRE 1, symptoms from all organ systems and psychosocial factors will be incorporated into INSPIRE 2. Data from this survey will be used to assess and compare (using t-tests, ANOVA, and thematic analysis) prevalence and clustering of different triggers, preventers and prodromes between SARDs. We are also currently conducting interviews with patients from a range of SARD groups, ethnicities, ages, and genders to explore their progression of symptoms, experiences of managing flares and adapting to living with their disease. Quantitative and qualitative methods are being integrated at several stages of the research process. Results We received >800 responses from the INSPIRE 1 cohort to open-ended questions about their flare symptoms, triggers and preventers/reducers. Triggers and preventers were numerous and diverse, and a trigger for one patient was sometimes a preventer for another (e.g. heat). With multidisciplinary team input, these have been categorized into factors including: pharmacological, dietary, biological, environmental, and psychosocial. A similar process of categorization has occurred for the diverse range of symptoms. Questions have been compiled for the INSPIRE 2 survey which will be widely distributed internationally to SARD patients. Conclusion Based on the rapid recruitment and positive response from SARD patients to previous surveys from this research team, a minimum sample size of N = 1500 is anticipated. Analysis will occur in early 2025. Highly novel results are anticipated in this currently under-researched area, and will be presented at the conference. Disclosure M. Piper: None. J.A. Bourgeois: None. T.A. Pollak: None. A. Tunks: None. L. Calderwood: None. E. Dalby: None. L. Andreoli: Consultancies; consultancy fees/ speaker fees from: Eli Lilly, Glaxo Smith Kline, Janssen, Novartis, UCB, and Werfen Group. A. Bortoluzzi: None. F. Naughton: None. A. Kaul: None. S. Taylor: None. J. Brimicombe: None. K. Naidu: None. X. Yan: None. D. D’Cruz: Corporate appointments; Leadership position on the APS charity board. Consultancies; consultancy/speaker fees from GSK, Eli Lilly, Vifor and UCB. M. Sloan: 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 | 0.017 | 0.019 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.003 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.002 | 0.002 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.001 | 0.001 |
| 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".