[End of life in patients under the care of paediatric palliative care teams. Multicentre observational study].

Autor:	Peláez Cantero MJ; Unidad de Crónicos complejos y Cuidados Paliativos pediátricos, Hospital Regional Universitario, Materno-Infantil de Málaga, Facultad de Ciencias de la Salud, Universidad de Málaga, Málaga, España. Electronic address: pelaez_mariajose@hotmail.com., Morales Asencio JM; Facultad de Ciencias de la Salud, Universidad de Málaga, Instituto de Investigación biomédica de Málaga (IBIMA), Málaga, España., Navarro Marchena L; Servicio de Atención Paliativa y Paciente Crónico Complejo, Hospital Sant Joan de Déu, Barcelona, España., Velázquez González MDR; Equipo de Cuidados Paliativos pediátricos, Hospital Virgen del Rocio, Sevilla, España., Sánchez Echàniz J; Equipo de Cuidados Paliativos pediátricos domiciliarios, Hospital Universitario de Cruces, Bilbao, España., Rubio Ortega L; Unidad de hospitalización a domicilio pediatrica, Servicio de Pediatría, Hospital general universitario de Alicante, Alicante, España., Martino Alba R; Unidad de Atención Integral Paliativa Pediátrica, Hospital Infantil Universitario Niño Jesús, Madrid, España.
Jazyk:	Spanish; Castilian
Zdroj:	Anales de pediatria [An Pediatr (Engl Ed)] 2021 Jul 21. Date of Electronic Publication: 2021 Jul 21.
DOI:	10.1016/j.anpedi.2021.06.012
Abstrakt:	Introduction: Around 2000 children and adolescents die each year in Spain, however, we know little about the particularities of deaths in paediatrics. The purpose of this study is to document the characteristics of patients who die in the care of paediatric palliative care teams in Spain. Patients and Methods: Retrospective, descriptive, multicentre study. Fourteen teams from all over the country participated. Results: Data were obtained from 164 patients. In most cases the underlying disease stemmed from oncological, neurological or neuromuscular processes. The median age at death was 6.9 years (RIC 11.2). The median follow-up time by the team was 0.3 years (RIC 0.8 years). The most frequent symptoms in the last week of life were dyspnoea, pain, increased secretions and sleep disorders. The median number of drugs administered to each patient one week prior to death was 6 (RIC 4). The place of death for 95 of the patients (57.9%) was hospital while 67 (40.9%) died at home. Conclusions: There was a wide age range of patients and they had substantial exposure to polypharmacy. The follow-up time shows that patients have late access to palliative care programmes. An effort should be made to introduce this care earlier rather than relegating it to the end of life. In Spain there is an unequal distribution of resources and not all teams can provide care at home. The place of death should be interpreted with caution. (Copyright © 2021 Asociación Española de Pediatría. Publicado por Elsevier España, S.L.U. All rights reserved.)
Databáze:	MEDLINE
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