RT Journal Article
T1 [Ethical attitudes of intensive care paediatricians as regards patients with spinal muscular atrophy type 1].
T2 Actitudes éticas de los pediatras de Cuidados Intensivos ante pacientes con atrofia muscular espinal tipo 1.
A1 Agra-Tuñas, 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-Nuñez, Antonio
K1 Atrofia muscular espinal tipo 1
K1 Clinical ethics
K1 Communication
K1 Comunicación
K1 Critical care
K1 Cuidados intensivos
K1 Decision making process
K1 Encuesta
K1 Familia
K1 Family
K1 Mechanical ventilation
K1 Non-invasive ventilation
K1 Spinal muscular atrophy type 1
K1 Survey
K1 Toma de decisiones
K1 Ventilación mecánica
K1 Ventilación no invasiva
K1 Ética asistencial
AB 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. 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). 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 NIV 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. 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.
YR 2016
FD 2016-03-02
LK http://hdl.handle.net/10668/9896
UL http://hdl.handle.net/10668/9896
LA es
DS RISalud
RD Apr 5, 2025