THE MISSION IS REMISSION©: A WEB‐ENABLED SELF‐MANAGEMENT PROGRAM FOR PEDIATRIC IBD TARGETING HEALTH‐RELATED QUALITY OF LIFE
Bibliographic record
Abstract
Background: Psychological and information-based interventions can positively impact health-related quality of life (QOL) in patients with chronic disease. Aim: To test a web-enabled home program (IBDC) of self-management, information, and peer support for pediatric IBD patients and their parents. Methods: In a series of n-of-1 studies, 40 patients (and 40 parents) were assessed during standard care and subsequently, IBDC care. Patients were enrolled with active disease, followed for two months to achieve remission, then entered six month control period with standard care, and finished with six month of IBDC intervention. The primary outcome was QOL, measured by IMPACT-III, with secondary outcomes of disease-specific knowledge (the IBD-KID), adherence to therapy, perceived stress and health care utilization. Results: Of 40 enrolled patient/parent dyads, data was available for analysis from the first seven dyads. For the 7 patient participants, mean age was 14.6 ± 2 yrs, 5 Crohn's disease (CD), 2 ulcerative colitis (UC). At study entry, mean PCDAI for CD patients was 30.5 ± 10, and UC disease activity index of 2.5 ± 2 for UC. By start of IBDC, all patients were in remission, although at end 1 each of UC and CD had active disease. The mean IMPACT score at start of the IBDC for those with inactive disease throughout was 161 ± 12, and 164 ± 9 at study completion. For those with active disease at study completion, the values were 138 ± 37 and 140 ± 30 respectively. Disease-related knowledge, as measured by IBD-KID, was 15 ± 5 at entry into IBDC, and 17 ± 4 at completion. Satisfaction questionnaires completed by patients and parents uniformly provided strongly positive endorsements of the program, although debriefing at study completion raised issues about appeal of computer game. Conclusions: Participants were uniformly and strongly supportive of the IBDC intervention. Preliminary results show positive trends, but final results for all 40 patient/parent dyads are required to assess the true impact on QOL and other outcomes of this innovative intervention.
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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 | 0.001 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.006 | 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".