Key result
Among 35 children with spinal muscular atrophy type 1, 26% were invasively ventilated, with no children receiving long-term ventilation (>90 days) or tracheostomy.
Population
35 children with confirmed spinal muscular atrophy type 1 treated at eight major Australian paediatric…
Design
Cohort
Authors
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Australian SMA1 ventilation patterns support palliative care models; leaves open comparative outcome data versus invasive strategies.
Observational (n=35)
Yes
The management of children with SMA 1 in Australia follows a consistent approach characterized as 'actively managed dying', avoiding long-term invasive ventilation and surgical feeding interventions.
Tassie et al. (2013) conducted an observational in Spinal muscular atrophy type 1 (SMA 1) (n=35). End-of-life care practices was evaluated on Invasive ventilation. Among 35 children with spinal muscular atrophy type 1, 26% were invasively ventilated, with no children receiving long-term ventilation (>90 days) or tracheostomy.
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