Dysphagia and its impact on quality of life in rare neuromuscular disorders

Déborah Santos Sales; Mariana Beiral Hammerle; Vívian Pinto de Almeida; Clarissa de Araujo Davico; Patricia Gomes Pinheiro; Rayanne da Silva Souza; Stephanie de Freitas Canelhas; Marcele Silva Carvalho; Karina Lebeis Peres

doi:10.1055/s-0045-1804920

Arquivos de Neuro-Psiquiatria, Table of Contents

CC BY 4.0 · Arq Neuropsiquiatr 2025; 83(02): s00451804920
DOI: 10.1055/s-0045-1804920

Original Article

Dysphagia and its impact on quality of life in rare neuromuscular disorders

Déborah Santos Sales

¹Universidade Federal do Estado do Rio de Janeiro, Rio de Janeiro RJ, Brazil.

²Universidade Federal do Estado do Rio de Janeiro, Hospital Universitário Gaffrée e Guinle, Rio de Janeiro RJ, Brazil.

³Casa Hunter, São Paulo SP, Brazil.

,

Mariana Beiral Hammerle

²Universidade Federal do Estado do Rio de Janeiro, Hospital Universitário Gaffrée e Guinle, Rio de Janeiro RJ, Brazil.

,

Vívian Pinto de Almeida

¹Universidade Federal do Estado do Rio de Janeiro, Rio de Janeiro RJ, Brazil.

²Universidade Federal do Estado do Rio de Janeiro, Hospital Universitário Gaffrée e Guinle, Rio de Janeiro RJ, Brazil.

³Casa Hunter, São Paulo SP, Brazil.

,

Clarissa de Araujo Davico

³Casa Hunter, São Paulo SP, Brazil.

,

Patricia Gomes Pinheiro

¹Universidade Federal do Estado do Rio de Janeiro, Rio de Janeiro RJ, Brazil.

²Universidade Federal do Estado do Rio de Janeiro, Hospital Universitário Gaffrée e Guinle, Rio de Janeiro RJ, Brazil.

³Casa Hunter, São Paulo SP, Brazil.

,

Rayanne da Silva Souza

³Casa Hunter, São Paulo SP, Brazil.

,

Stephanie de Freitas Canelhas

³Casa Hunter, São Paulo SP, Brazil.

,

Marcele Silva Carvalho

⁴Universidade Veiga de Almeida, Rio de Janeiro RJ, Brazil.

,

Karina Lebeis Peres

¹Universidade Federal do Estado do Rio de Janeiro, Rio de Janeiro RJ, Brazil.

²Universidade Federal do Estado do Rio de Janeiro, Hospital Universitário Gaffrée e Guinle, Rio de Janeiro RJ, Brazil.

³Casa Hunter, São Paulo SP, Brazil.

› Author Affiliations

Abstract

Background Patients with neuromuscular diseases (NMDs) often face swallowing difficulties (dysphagia) as part of their condition.

Objective To determine the prevalence of self-reported swallowing disorders in patients with rare NMDs and examine their correlation with related quality of life (QoL).

Methods The study included 103 patients with confirmed rare NMDs. Dysphagia risk was assessed using the validated Eating Assessment Tool-10 (EAT-10), and QoL related to swallowing was measured with the SWAL-QoL survey. Correlations between EAT-10 and SWAL-QoL scores were analyzed. Additionally, the mean questionnaire scores were compared among patients classified as dysphagic, dysphagic with high aspiration risk, and nondysphagic.

Results The estimated prevalence of dysphagia in the cohort, based on EAT-10, was 52.4%. Higher scores were significantly correlated with poorer swallowing-related QoL, except for the sleep domain. The most affected SWAL-QoL domains were burden, eating desire, eating duration, food selection, communication, fear, mental health, social functioning, and dysphagia battery score (DBS), with significant differences observed among the classifications (p < 0.001 for most domains, and p = 0.015 for eating desire). No statistically significant difference in swallowing QoL was found between sitters and walkers.

Conclusion Dysphagia is a prevalent symptom in patients with rare NMDs, affecting 52.4% of the cohort and significantly impacting QoL in nearly all domains except sleep.

Keywords

Deglutition Disorders - Neuromuscular Diseases - Amyotrophic Lateral Sclerosis

Bibliographical Record
Déborah Santos Sales, Mariana Beiral Hammerle, Vívian Pinto de Almeida, Clarissa de Araujo Davico, Patricia Gomes Pinheiro, Rayanne da Silva Souza, Stephanie de Freitas Canelhas, Marcele Silva Carvalho, Karina Lebeis Peres. Dysphagia and its impact on quality of life in rare neuromuscular disorders. Arq Neuropsiquiatr 2025; 83: s00451804920.
DOI: 10.1055/s-0045-1804920

Full Text

References

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