5: Development of a Transition Protocol for Pediatric Chronic Intestinal Failure
Bibliographic record
Abstract
Introduction: Life expectancy of children with chronic intestinal failure has greatly improved. This is mainly due to improvement of home parenteral nutrition (HPN) and prevention and treatment of its complications. Children are now able to grow into adulthood which requires transfer from pediatric to adult health care. However, a protocol for a structured transition is lacking. Therefore, as first step in developing a protocol, we investigated the view of health care professionals from various disciplines in this field concerning transition. Methods: A survey consisting of 20 items for transition was sent out to healthcare professionals throughout Europe, United Kingdom, United States and Canada. Next to 20 items, an open ended question to fill in other suggestions was also included. Interventions scoring higher than 80% by the participants, were included in the protocol. Interventions scoring between 50% and 80% and other own suggestions were discussed during a consensus meeting and included when consensus was reached. Results: A total of 80 healthcare professionals from seventeen various countries (Belgium, Canada, Denmark, Finland, France, Germany, Israel, Italy, Netherlands, Norway, Portugal, Prague, Scotland, Spain, Sweden, United Kingdom and United States) participated in this survey study, see figure 1. A consensus meeting was held in Amsterdam, The Netherlands, with a panel of gastroenterologists, surgeons, dietitians, specialized nurses and patient representatives in the intestinal failure field. A list of most effective interventions was created. This is the final list outlined: transition starting 1-2 years prior to transfer, psychological screening and offering help if needed, assessment of knowledge, understanding and autonomy of the patient, providing patient with a medical summary, initiating discussion about transition, directing all questions to patients and instructing how to keep track on health care related practices, effective transmission of information from the pediatric to the adult team, combined consultation with the adult and pediatric team prior to transfer and if possible, nurse specialist working in both services.Figure 1.: Participation of health care professionals (n=80)Conclusions: A protocol for transition for pediatric chronic intestinal failure will contribute to a more structured transition process in this rather vulnerable patient group. Therefore, the next step is to assess the view of patients who soon will be transferred or are already have been transferred (aged between 16 and 24) and their parents through validated and reliable Transition Readiness Assessment Questionnaires (version 6.0). Finally, the combination of the most-effective-interventions list and the view and current experience of patients and their parents in various countries will help to create a more standardized protocol. This transition protocol will lead to better management of a complex process in a very vulnerable patient group.
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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 | 0.113 | 0.110 |
| Meta-epidemiology (narrow) | 0.003 | 0.002 |
| Meta-epidemiology (broad) | 0.003 | 0.004 |
| Bibliometrics | 0.004 | 0.002 |
| Science and technology studies | 0.003 | 0.002 |
| Scholarly communication | 0.002 | 0.004 |
| Open science | 0.004 | 0.006 |
| Research integrity | 0.004 | 0.006 |
| Insufficient payload (model declined to judge) | 0.029 | 0.008 |
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".