5: Development of a Transition Protocol for Pediatric Chronic Intestinal Failure
Notice bibliographique
Résumé
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.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,113 | 0,110 |
| Méta-épidémiologie (sens strict) | 0,003 | 0,002 |
| Méta-épidémiologie (sens large) | 0,003 | 0,004 |
| Bibliométrie | 0,004 | 0,002 |
| Études des sciences et des technologies | 0,003 | 0,002 |
| Communication savante | 0,002 | 0,004 |
| Science ouverte | 0,004 | 0,006 |
| Intégrité de la recherche | 0,004 | 0,006 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,029 | 0,008 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».