Abstract
Who Influences Parents’ Decision on Life Support Treatments for Children with Spinal Muscular Atrophy Type 1?
Highlights
Spinal muscular atrophy (SMA) is the second most common, potentially lethal autosomal recessive disorder [1]
All participants had to fulfill two inclusion criteria: a) to be parents of at least one child diagnosed with Spinal Muscular Atrophy type 1 (SMA1) and; b) SMA1 child’s diagnosis had been genetically confirmed
The child with SMA 1: Sex distribution shows that 52.9% of patients were males and 47.1% females. 62.8% of patients were born spontaneously while in 37.2% of cases it was necessary to perform a caesarean section
Summary
Spinal muscular atrophy (SMA) is the second most common, potentially lethal autosomal recessive disorder [1]. This disorder affects 1 in 8.000 to 10.000 infants with a carrier frequency of 1 in 34 [2]. Parents of children with SMA1 have three options for respiratory treatment: letting nature take its course; tracheostomy and invasive mechanical ventilation (TV); continuous non- invasive respiratory muscle aid (NRA), including non-invasive ventilation and mechanically assisted cough [7]. We aimed at assessing the influence of those who are part of the parents’ social network (family, friends and health professionals) when they are making decisions about nutritional and respiratory support treatments for their SMA 1 children
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