A91 UNMET NEEDS OF INFLAMMATORY BOWEL DISEASE PATIENTS IN CANADA: RESULTS OF A WEB SURVEY
Bibliographic record
Abstract
Canada has among the highest prevalences of inflammatory bowel disease (IBD) in the world, at 0.7% of the population. Educational programs are typically aimed at physicians to bridge knowledge gaps. Little is known about the gaps that exist at the patient level. To identify unmet needs in IBD care and knowledge from a patient perspective. The Gastrointestinal Society hosted a survey on its English (www.badgut.org) and French (www.mauxdeventre.org) websites from July 6 to September 4, 2018, asking patients about their views on the unmet needs in IBD. Survey links were posted on social media, boosted via ads. To qualify, survey participants had to be living in Canada and have moderate to severe IBD. Questions included a variety of topics on IBD, such as medication, health care, and day-to-day life. Four hundred and thirty-two IBD patients (81% female) responded from all provinces (56% Crohn’s disease, 42% ulcerative colitis, 7% other). When asked their ultimate goal in treating IBD, aside from finding a cure, responses included maintaining a good quality of life (36%) and achieving remission (32%). Common concerns regarding flares of disease included losing the ability to function daily (63%), pain (58%), impact on work (33%) or family (25%), and needing surgery (22%). When asked which tools offered by their gastroenterologist were most useful to them, 60% said tests and monitoring, 54% medication selection and monitoring, 39% information on treatment options, 34% explanation of treatment goals, and 29% discussions on quality of life. 56% of respondents claimed that medications currently available only somewhat control their IBD and 20% said that they do not control symptoms. 43% of respondents were concerned about the risks of surgery. 63% of respondents were somewhat concerned, concerned, or very concerned about non-medical switching from an innovator biologic to a biosimilar, and 89% were somewhat to very concerned that there were fewer biologic options for IBD than for other immune-mediated inflammatory diseases. Respondents were interested in learning more about other aspects of treatment, including diet (57%), medical cannabis (48%), and increasing support from their health care team (39%). Canadians with IBD believe their symptoms are not under control much of the time. They worry about the impact of disease flares on their day-to-day lives and want more support from their health care team. Many individuals want to learn more about how diet and medical cannabis might help. The Gastrointestinal Society received a grant from Janssen Canada.
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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 | 0.001 | 0.005 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.002 | 0.005 |
| Science and technology studies | 0.003 | 0.001 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.003 | 0.000 |
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".