068 Asking the right questions? Rheumatoid arthritis patients’ views on rheumatology consultations: results of an online survey
Bibliographic record
Abstract
Background: Intensive, goal-driven treatment of rheumatoid arthritis (RA) has led to improved disease activity outcomes. However, focusing on abrogation of inflammation may lead to other important issues being overlooked. We conducted an online study of RA patients to find out their views on which issues were being addressed during rheumatology consultations. Methods: An online survey of patients’ views was devised with input from consultant rheumatologists, representatives of the National Rheumatoid Arthritis Society (NRAS) and a small focus group of RA patients. The survey asked questions about which factors were most likely to be discussed and examined during rheumatology clinic appointments; their and their rheumatologist’s awareness of treatment goals and whether rheumatology appointments covered all of the issues that they considered important. The survey was distributed by NRAS by email and social media and results were interpreted with further assistance from NRAS and the patient focus group. Results: There were 1,287 respondents; 86% female, median age 62 years (IQR 54-69), median duration 10 years (IQR 5-18). 89% appointments were with a consultant rheumatologist or specialist nurse and most lasted between 6-20 minutes. Patients were asked about things that mattered to them most (40%) and all the time (24%) and these matters were often prioritised most (42%) or all the time (20%). Rheumatologists seemed most interested in asking about symptoms of pain, stiffness, swelling and medication rather than symptoms of fatigue, mood, work, functional ability or family life/sexuality. Joint examinations were reported most/all the time in 81% of appointments, usually for tender or swollen joints. 65% respondents were aware of disease activity scores being calculated and 50% were informed of the result most/all the time. 58% respondents felt their RA was adequately assessed. Respondents reported universally low scores for how well their ability to self-care, mobilise, work, exercise, relationships and mood were assessed. 57% respondents had never discussed disease activity goals and 74% had not discussed their personal goals with their rheumatologist. Conclusion: Patients report that rheumatology appointments appear focused on assessing signs and symptoms of inflammation. However, there may be an important unmet need to address other factors since treatment and personal goals are discussed in the minority of appointments and patients report that non-articular symptoms are infrequently and poorly assessed. Disclosures: J. Dale: Grants/research support; NHS Lanarkshire, NHS Research Scotland. Other; Abbvie. S. Clements: None. K. D: None. H. L: None. A. S: None. L. Connell: None. C. Jacklin: None. A. Bosworth: 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 | 0.004 | 0.014 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.004 | 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".