RT Journal Article
T1 Ethical attitudes of intensive care paediatricians as regards patients with spinal muscular atrophy type 1
A1 Agra Tunas, Maria Carmen
A1 Hernandez Rastrollo, Ramon
A1 Hernandez Gonzalez, Arturo
A1 Ramil Fraga, Carmen
A1 Cambra Lasaosa, Francisco Jose
A1 Quintero Otero, Sebastian
A1 Ruiz Extremera, Angela
A1 Rodriguez Nunez, Antonio
K1 Spinal muscular
K1 atrophy type 1
K1 Clinical ethics
K1 Family
K1 Communication
K1 Decision making process
K1 Mechanical ventilation
K1 Non-invasive ventilation
K1 Survey
K1 Critical care
K1 Consensus statement
K1 Of-life
K1 Children
K1 Support
K1 Ventilation
K1 Standard
K1 End
AB Introduction: Spinal muscular atrophy type 1 (SMA-1) is a progressive and fatal disease that leads to ethical problems for Paediatric professionals. Our objective was to determine the ethical options of Paediatric Intensive Care Unit (PICU) paediatricians as regards a child with SMA-1 and respiratory failure. Material and methods: A cross-sectional descriptive study was conducted using an anonymous questionnaire sent to PICUs in Spain (which can be accessed through the Spanish Society of Paediatric Critical Care web page). Results: Of the 124 responses analysed, 70% were from women, 51% younger than 40 years, 54% from a PICU with more than 10 beds, 69% with prior experience in such cases, and 53% with religious beliefs. In the last patient cared for, most paediatricians opted for non-invasive mechanical ventilation (NIV) and limitation of therapeutic effort (LET) in case of NW failure. Confronted with a future hypothetical case, half of paediatricians would opt for the same plan (NIV + LET), and 74% would support the family's decision, even in case of disagreement. Age, prior experience and sex were not related to the preferred options. Paediatricians with religious beliefs were less in favour of initial LET. Less than two-thirds (63%) scored the quality of life of a child with SMA-1 and invasive mechanical ventilation as very poor. Conclusions: Faced with child with SMA-1 and respiratory failure, most paediatricians are in favour of initiating NIV and LET when such support is insufficient, but they would accept the family's decision, even in case of disagreement. (C) 2015 AsociaciOn Espanola de Pediatria. Published by Elsevier Espana, S.L.U. All rights reserved.
PB Ediciones doyma s a
SN 1695-4033
YR 2017
FD 2017-03-01
LK http://hdl.handle.net/10668/18682
UL http://hdl.handle.net/10668/18682
LA es
DS RISalud
RD Apr 5, 2025