067 Asking the right questions? Rheumatoid arthritis patients’ views on the use of patient reported outcomes
Bibliographic record
Abstract
Background: Focusing on assessment of a patient’s disease activity burden may lead to other important issues being overlooked during rheumatology appointments. Patient reported outcomes (PROMs) allow patients to directly communicate their experiences of specific issues to clinicians. We conducted an online survey of rheumatoid arthritis (RA) patients to ask their opinion on the potential value of gathering PROMs in addition to current assessments. Methods: Clinicians, representatives of National Rheumatoid Arthritis Society (NRAS) and a small focus group of patients collaborated to produce an online survey asking patients’ opinions on the use of PROMs during routine appointments and which PROMs they felt would be most valuable to collect. Mixed question styles were employed gathering semiquantitative data (e.g. strength of agreement) in relation to single subject statements. Links to the survey were distributed by NRAS via email and social media and results were interpreted with input from NRAS representatives 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). 65% of respondents felt a rheumatology doctor was most likely to make decisions regarding RA treatment changes. The combination of individuals felt to be most important to making shared decisions was the patient (85% respondents), rheumatologist (93%) and specialist nurse (60%). 82% agreed or strongly agreed that patient reported information should be given greater importance when making decisions about treatment changes. 62% agreed or strongly agreed that using PROMs to influence treatment decisions would be safe. 67% agreed or strongly agreed that using PROMs would lead to more effective treatment. 78% agreed or strongly agreed that using PROMs would lead to treatment that was more specific to their needs/goals. 72% agreed or strongly agreed that they would be happy for rheumatologists to base treatment decisions upon PROMs. PROMs relating to pain, fatigue and quality of life received the highest scores for use in influencing treatment decisions and assessing treatment response. The most popular method (43%) of completing PROMs was at home, online, prior to attending rheumatology appointment. Conclusion: Incorporating PROMs into routine assessments is supported consistently by RA patients, who consider it safe and potentially leading to more effective treatment that is specific to their needs. RA patients favour the use of PROMs related to pain, fatigue and quality of life; however, further work is required to assess the effectiveness, safety and most efficient means of implementation. 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.
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 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 | 0.014 | 0.036 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.002 | 0.001 |
| Open science | 0.000 | 0.002 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.007 | 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".