Development and results of perinatal palliative care program: a retrospective cohort study
Notice bibliographique
Résumé
PURPOSE: From September 2014 to April 2016, the project "Let me be" was carried out by Gajusz Foundation. We aimed to inform clinical practice by describing a model of perinatal palliative care and to determine who is referred for care, what happens after referral and delivery, pregnancy outcomes, and referral rates. METHODS: A retrospective analysis of the medical records of 72 families who qualified for perinatal palliative care; data on other project activities were also presented. RESULTS: The most important project outcome was the development of a perinatal palliative care model in which perinatal hospice functioned outside the hospital structure. During the project, 20 training sessions for 126 healthcare workers were organized, guidebooks were prepared for the medical staff and parents, and 2 films were produced. Seventy-two women were enrolled in the perinatal palliative care program. Approximately 4.9-24.2% of eligible families entered the perinatal palliative care program. Trisomies 18,13,21 were diagnosed in 33% of the cases; 47 live births and 21 stillbirths were observed. Four families decided to terminate the pregnancy; 26 children died on the first day of life, and 10 died within the first week of life. CONCLUSION: Parents who were referred for perinatal palliative care received multidisciplinary support. We observed an increase in the percentage of referrals over 7 years, but the incomplete application of the program remains problematic. Systemic changes in postgraduate training and subsequent legislative changes should also be considered. Our research confirms the characteristics of diagnosis, referrals, and outcomes observed in other studies. WHAT IS KNOWN: • The perinatal palliative care (PPC) programs may be comprehensive, initiated early, and integrative. • Most publications talk about hospital based care. WHAT IS NEW: • In our model, the perinatal hospice functioning outside the hospital structure takes over the role of the care coordinator and offers a multidisciplinary support for parents. • Due to the insufficient application to the PPC program the systemic changes in the training of obstetricians and legislative changes which would oblige the physician diagnosing a lethal abnormality to inform and refer the woman to PPC should be considered.
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Prédiction distillée sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,002 | 0,002 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,000 | 0,001 |
| Études des sciences et des technologies | 0,000 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,000 | 0,000 |
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 tête enseignante, 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 ».