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Mild dysphagia does not influence survival in ventilated amyotrophic lateral sclerosis patients

  • Miguel Oliveira Santos
    Correspondence
    Corresponding author at: Department of Neurosciences and Mental Health, Hospital de Santa Maria, Centro Hospitalar Universitário Lisboa Norte, Avenida Professor Egas Moniz, 1648-028 Lisbon, Portugal.
    Affiliations
    Institute of Physiology, Instituto de Medicina Molecular, Faculdade de Medicina da Universidade de Lisboa, Lisbon, Portugal

    Department of Neurosciences and Mental Health, Hospital de Santa Maria, Centro Hospitalar Universitário Lisboa Norte, Lisbon, Portugal
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  • Marta Gromicho
    Affiliations
    Institute of Physiology, Instituto de Medicina Molecular, Faculdade de Medicina da Universidade de Lisboa, Lisbon, Portugal
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  • Susana Pinto
    Affiliations
    Institute of Physiology, Instituto de Medicina Molecular, Faculdade de Medicina da Universidade de Lisboa, Lisbon, Portugal
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  • Michael Swash
    Affiliations
    Institute of Physiology, Instituto de Medicina Molecular, Faculdade de Medicina da Universidade de Lisboa, Lisbon, Portugal

    Departments of Neurology and Neuroscience, Barts and the London School of Medicine, Queen Mary University of London, UK
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  • Mamede de Carvalho
    Affiliations
    Institute of Physiology, Instituto de Medicina Molecular, Faculdade de Medicina da Universidade de Lisboa, Lisbon, Portugal

    Department of Neurosciences and Mental Health, Hospital de Santa Maria, Centro Hospitalar Universitário Lisboa Norte, Lisbon, Portugal
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Published:August 22, 2022DOI:https://doi.org/10.1016/j.jns.2022.120388

      Highlights

      • It is unknown if mild dysphagia affects survival of ALS patients on continuous NIV.
      • We observed that these patients rarely progressed to marked dysphagia.
      • The presence of mild dysphagia did not influence survival.
      • Our findings are relevant for gastrostomy decision-making in this ALS population.

      Abstract

      Background

      Some amyotrophic lateral sclerosis (ALS) patients on continuous non-invasive ventilation (NIV) develop dysphagia demanding a clinical decision regarding gastrostomy.

      Material and methods

      We have analyzed a cohort of seventy-four ALS patients dependent on continuous NIV (>22 h/day) and without feeding tube.

      Results

      Three patients underwent to gastrostomy due to dysphagia progression. The other patients were categorized in two groups according to question 3 (“swallowing”) of the ALSFRS-R scale: group 1 (G1), score = 4 (normal), and group 2 (G2), score = 3 or 2 (mild-moderate dysphagia). G2 included 29 (40.8%) patients. Survival was similar in G1 and G2 (p = 0.12). Disease duration (p < 0.0001) and ALSFRS-R progression rate (p = 0.008) at NIV >22 h/day were predictors for survival in G1, but not for G2. Gender, onset-region, and age at NIV >22 h/day did not influence survival.

      Conclusions

      Our findings are relevant when discussing gastrostomy with these patients.

      Keywords

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