Patients requiring pediatric palliative care for advanced heart disease in France: A descriptive study
2021
La Fay, C. | Le Moine, P. | Blanc, L. | Abou Chahla, W. | Phan Hoang, N. | Vial-Cholley, E. | Cojean, N. | Suc, A. | Saultier, P. | Aries, E. | Ovaert, C. | Revon-Rivière, G. | Service de pédiatrie spécialisée et médecine infantile (neurologie, pneumologie, maladies héréditaires du métabolisme) [Hôpital de la Timone - APHM] ; Hôpital de la Timone [CHU - APHM] (TIMONE) | CHRU de Brest, Département information médicale (CHU - BREST ) ; Centre Hospitalier Régional Universitaire de Brest (CHRU Brest) | Université Grenoble Alpes (UGA) | Hôpital Albert Calmette ; Université de Lille, Droit et Santé-Centre Hospitalier Régional Universitaire [Lille] (CHRU Lille) | Institut d'hématologie et d'oncologie pédiatrique [CHU - HCL] (IHOPe) ; Hospices Civils de Lyon (HCL) | Service de pathologie [CHU Strasbourg] ; Centre Hospitalier Universitaire [Strasbourg] (CHU Strasbourg) | Centre Hospitalier Universitaire de Toulouse (CHU Toulouse) | Centre recherche en CardioVasculaire et Nutrition = Center for CardioVascular and Nutrition research (C2VN) ; Aix Marseille Université (AMU)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE) | Hôpital de la Timone [CHU - APHM] (TIMONE) | Chirurgie orthopédique et pédiatrique [Hôpital de la Timone - APHM] ; Aix Marseille Université (AMU)-Assistance Publique - Hôpitaux de Marseille (APHM)-Hôpital de la Timone [CHU - APHM] (TIMONE)
International audience
Show more [+] Less [-]English. Introduction: Pediatric palliative care (PPC) teams address unmet needs and improve the quality of life of patients with life-limiting conditions across pediatric subspecialties. However, little is known about the timing, reasons, and nature of PPC team interventions in advanced heart diseases (AHD).Objectives: Here we describe how, when, and why PPC teams interact with referred teams of children suffering from AHD.Methods: We conducted a retrospective nationwide survey among PPC teams in France. All patients referred to participating PPC teams for a cardiologic disease in 2019 were studied.Results: Among six PPC teams, 18 patients with AHD had a PPC consultation in 2019. Six of these patients had cardiomyopathy and 12 had congenital heart disease (CHD). The median age at referral was 0.9 months for CHD and 72 months for cardiomyopathy. An antenatal diagnosis had been made for six families with CHD, and two of them were referred to PPC before birth allowing for a prenatal palliative care plan. The main reason for referral was ethical considerations (50%) followed by organization for home-based palliative care (28%). PPC teams participated in ethical discussions when asked to but also provided family support (12/18), home-based PPC (9/18), coordination of care (5/18), support of the referred team (4/18), and symptoms management (3/18)Conclusion: The main reason for referral to PPC was ethical considerations, but PPC interventions followed a holistic model of care. Prospective outcomes measurement and partnerships should be further developed. (C) 2021 French Society of Pediatrics.
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