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Non-invasive respiratory support in children and young adults with complex medical conditions in pediatric palliative care
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  • Published on: 8 August 2024
    Are children with neuromuscular diseases still eligible for pediatric palliative care?
    • Francesca Benedetti, PhD Student in Pediatrics University of Padua
    • Other Contributors:
      • Caterina Agosto, Pediatric Neuromuscular Specialist

    To the Editor

    We read the article by Fauroux et al.(1) with great interest and appreciation, as it highlights the positive impact of NIV or CPAP on children with complex medical conditions in pediatric palliative care (PPC).
    However, we do have some points to share.

    First, patients with neuromuscular diseases were excluded because they fall into Category 2, defined as “conditions where premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities”.
    In the same classification, Category 3 includes examples of “Progressive conditions without curative treatment options” such as muscular dystrophies(2).
    Neuromuscular disorders constitute a broad and diverse category, with a wide range of complexity and, consequently, global care needs. Nowadays, a condition such as spinal muscular atrophy (SMA) diagnosed in the symptomatic stage may fall under the definition of Category 2, while palliative care is not required for patients with SMA treated pharmacologically when they are asymptomatic or have mild symptoms. Therefore, we believe that excluding a priori all patients with neuromuscular diseases leads to an inaccurate representation of the population followed by pediatric palliative care, which is not based on pathology but on patients' needs.

    Second, in the article patients were included if their care comprised at least two of the following...

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    Conflict of Interest:
    None declared.