O13 Working definition of gastrointestinal dystonia of severe neuro-disability; outcome of the BSPGHAN/BAPM/BAPS/APPM/BPNA appropriateness panel
Notice bibliographique
Résumé
Background and Aims Children and young people with severe neurosdisabling conditions (CYPWSND) experience an array of serious gastrointestinal symptoms beyond gastro-oesophageal reflux, constipation or dependence on artificial nutrition. When enteral feeds leads to disabling dystonia the term ‘gastrointestinal dystonia of severe neurodisability’ (GID) has been applied by clinicians. However a clear definition with criteria for entry point is lacking in the literature. We describe the methods for formal establishment of an agreed definition of GID. Methods After commissioning by BSPGHAN, systematic review1 and consultation with public bodies it was agreed, due to paucity of evidence that an appropriateness panel should be the forum for formulation of output on GID. A writers group structured the questions for the survey definition, based on the limited written evidence and added professional experience. A panel of 27 experts in their field were assembled from 5 stakeholder groups including: Gastroenterology, Neurology/Neurodisability, Surgery, Palliative Care and Allied Health Professionals. Geographic representation was from 13 UK specialist centres (including all 4 nations) and 1 centre from Republic of Ireland. The panel rated the appropriateness of definition, investigations and management of GID. A scale of 1–9 enabled scoring of 1–3 to indicate inappropriate, 4–6 uncertain, 7–9 appropriate as criteria for recommendation. Panel agreement index was calculated using a continuous likelihood ratio, with <1 indicated ‘general agreement’ and >1 ‘no agreement’. Results were discussed at a moderated. Results All of the panel completed all questions on ‘common’ (table 1) and ‘uncommon’ features of GID. The panel had strong concurrence that GID definition required patients have GMFCS 4–5 cerebral palsy or equivalent and that a temporal relationship between symptoms and enteral feeding had to be present (although this relationship may lessen or cease during progressive disease). Pain, distress, retching, autonomic activation and hypertonicity were seen as common features. Temporal relationship with bowel habit, involuntary movements were considered less common. The diagnosis should be a positive clinical diagnosis (not of exclusion) made by a specialist multi-disciplinary team with experience of feeding disorders in severe neuro-disability. Features suggesting patients feed intolerance has reached the threshold for GID would include malnutrition primarily due to feed cessation and GI symptoms being the greatest burden on QOL for patient/family on appropriate survey. Conclusions We present a coherent first definition for GID by consensus of a panel of identified experts drawn from 5 invested stakeholder groups. Clear entry point for diagnosing GID will allow for important epidemiological work to report investigations, interventions and outcomes for this complex group of patients. Identifying significant morbidity care burden and mortality in this patient group will help advocate for appropriate health resources, support to carers and families. The ongoing development of a management framework through completion of the RAND2 process in 2022 should assist navigation of the complex medical and ethical challenges of management of distressing and debilitating symptoms for patients with this condition. Reference McConnell N, Beattie LM, Richards CA Protheroe S, Barclay AR. JPGN; 2018: 1002 https://www.rand.org/pubs/monograph_reports/MR1269.html Acknowledgement BSPGHAN BiG funding 2020.
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 | 0,071 | 0,124 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,001 |
| Méta-épidémiologie (sens large) | 0,003 | 0,005 |
| Bibliométrie | 0,005 | 0,006 |
| Études des sciences et des technologies | 0,002 | 0,002 |
| Communication savante | 0,004 | 0,003 |
| Science ouverte | 0,004 | 0,007 |
| Intégrité de la recherche | 0,004 | 0,003 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,015 | 0,005 |
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 ».