S972 The Real World Global Use of Patient-Reported Outcomes (PROs) for the Care of Patients With IBD
Bibliographic record
Abstract
Introduction: Many patient-reported outcomes (PROs) have been developed for inflammatory bowel disease (IBD), often for research, without clear recommendations for clinical use. PROs differ from physician-reported disease activity indices; they assess patients’ perceptions of their symptoms, functional status, mental health, and quality of life, among other areas. The use of PROs and their utility in clinical practice is unknown. Thus, we sought to investigate the current global use and barriers to using PROs in clinical practice for IBD. Methods: A cross-sectional survey was performed. Members of the International Organization for the Study of Inflammatory Bowel Disease (IOIBD) were invited to participate and invite regional colleagues. Results: There were 194 respondents, including adult/pediatric gastroenterologists, advanced-practice providers, and colorectal surgeons from 5 continents. The majority (80%) use PROs in clinical practice, 65% found value in routine use, and 50% indicated that PROs influenced patient management. 31 different PROs for IBD were reportedly used in clinical practice. For providers who never use PROs, the most significant barriers were not being familiar with PROs (53%), not knowing how to incorporate the results of PROs into clinical practice (33%), lack of integration into the electronic medical record (EMR) (28%), and time constraints (20%). There was no significant difference in volume of IBD patients seen per week or time spent during a follow up visit between providers who use and do not use PROs. Most participants (91%) agreed that it would be beneficial to have an accepted set of PROs that were consistently used. Suggested PRO tools are listed in Table. The majority (60%) thought that there should be some cultural differences in PROs used globally but that the PROs for IBD should be consistent around the world. Conclusion: PROs are used frequently in clinical practice with wide variation in which PROs are used and how they influence patient management. Education around how to use and interpret an accepted set of PRO tools that are integrated into the EMR would decrease barriers for use and could allow for global harmonization. Patient perceptions of PROs for IBD is being explored and will further inform this process. Table 1. - Suggested patient-reported outcome (PRO) tools to be used in clinical practice for the care of patients with IBD Patient-Reported Outcome (PRO) Tool Proportion of Providers Recommending each PRO Tool (%) PRO2 or PRO3 15.4 Simple clinical colitis activity index (SCCAI) 14.9 Patient-Reported Harvey-Bradshaw Index (patient-reported HBI) 14.6 Survey Index CDAI 10.8 Short IBDQ 10.3 IBD Disk 7.3 IBD Control 4.1 Facit-Fatigue Scale 4.1 Other 3.8 Short Health Scale 3.2 EQ-5D-5L 2.7 General Psychological Well-Being Score (GPP) 2.4 Manitoba Inflammatory Bowel Disease Index 2.4 Work Productivity & Activity Impairment Questionnaire (WPAI) 1.9 PROMIS-10 0.01 ICHOM Standard Set 0.01 * Providers were allowed to respond to more than 1 PRO tool
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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 | 0.009 | 0.028 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.001 | 0.003 |
| Science and technology studies | 0.000 | 0.001 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.007 | 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".