P451 Compound IBD patient profiles are related to specific information needs – an Israeli national survey
Bibliographic record
Abstract
Background: Recent studies show that a majority of IBD patients receive insufficient information regarding their disease. The wide range of knowledge needs necessitates resources that may improve patient adherence and outcomes. The aims of this nationwide survey of IBD patients were to relate specific patient profiles to unique information needs, with the intent of constructing an interactive, patient tailored, knowledge resource. Methods: Patients from the Israeli Crohn's & Colitis Foundation were asked to complete a questionnaire aimed at rating the amount of information received at time of diagnosis, the importance of information to be delivered for newly diagnosed patients, and the current importance of information topics for patients with longstanding disease. We performed an exploratory factor analysis of the baseline questionnaire responses, and analyzed the responses of a predetermined set of 20 patient profiles generated by the study team Results: A total of 571 patients (52% males) completed the questionnaire, 382 with Crohn's disease, 179 with ulcerative colitis and 10 with IBD-Undefined. Little information was received at disease onset, with a low rating spanning the whole questionnaire (average rating of 0.9 out of 5). The rating of importance of information topics averaged 4.2/5, thus reflecting unmet needs. Average rating of current information needs was also rated high (average 3.5/5), implying continued relevance to the experienced patient. Factor analysis for current needs grouped the responses into six knowledge domains (factors), namely: therapy & complications; nutrition; stress & coping; social & religion; work & disability; and long term complications, all rated as highly important (6/8), except for social & religion (3.2/8). Analysis of the data by single questions or by knowledge domains did not yield specific associations to demographic and clinical characteristics. Analysis by patient profiles found significant, clinically relevant associations to specific knowledge domains. For instance, patients newly diagnosed at an age>50 and patients diagnosed more than 10 years ago showed less interest in information regarding work & disability, while patients with active disease showed more interest in information regarding work & disability, stress & coping and therapy & complications. Patients in remission but on mesalamine or no therapy showed less interest in all factors except for nutrition and long term complications Conclusions: Our study clearly demonstrates unmet patient information needs, spanning all knowledge domains. Analysis per compound patient profiles revealed unique associations to information topics, and paves the way to building a patient tailored information resource
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 | 0.001 | 0.002 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.003 | 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".