REVISÃO
Early gastrostomy
associated with speech therapy in patients with amyotrophic lateral sclerosis
Benefícios da gastrostomia precoce associada a terapêutica fonoaudiológica em pacientes com esclerose
lateral amiotrófica
Viviane Marques*, Marco Orsini**, Rossano Fiorelli***, Victor Hugo Bastos****, Silmar Teixeira****, Stenio Fiorelli***, Andréa Povedano***, Pietro Novelino***, Camila Rodrigues Almeida***, Adriana Leico Oda*****, Marcos RG de Freitas******, Acary Souza Bulle Oliveira*****, José Teixeira de Seixas Filho*******, Patricia Maria Dusek*******
*Departamento de
Fonoaudiologia, UNIRIO, Programa de Pós-Graduação, **Programa de Mestrado em
Ciências Aplicadas em Saúde, Universidade Severino Sombra, USS, Vassouras e
Programa de Pós-Doutorado pela Universidade Federal do Piaui (Brain Mapping and
Plasticity Laboratory), Departamento de Cirurgia,UNIRIO,
Programa de Pós-Graduação e Doutorado, Programa de Mestrado em Desenvolvimento Local, UNISUAM, Bonsucesso RJ, ***Programa de Mestrado em Ciências
Aplicadas em Saúde, Universidade Severino Sombra, USS, Vassouras e Departamento
de Cirurgia, UNIRIO, Programa de Pós-Graduação e Doutorado, Programa de Mestrado em Desenvolvimento Local, UNISUAM, Bonsucesso RJ, ****Departamento de
Fisioterapia, Universidade Federal do Piaui (Brain Mapping and Plasticity
Laboratory), *****Departamento de Neurologia, Universidade Federal de São
Paulo, UNIFESP, ******Universidade Federal do Rio de Janeiro, Serviço de
Neurologia, UFRJ, *******Programa de Mestrado em Desenvolvimento Local, UNISUAM, Bonsucesso RJ
Recebido
13 de novembro de 2017; aceito 15 de fevereiro de 2018.
Correspondence: Viviane Marques, Serviço de Fonoaudiologia do Hospital Universitário Gaffrée e Guinle, Rio de Janeiro, E-mail: vivianemarquesfono@hotmail.com; Marco Orsini: orsinimarco@hotmail.com; Rossano Fiorelli: fiorellirossano@hotmail.com; Victor Hugo Bastos: victorhugobastos@ufpi.edu.br; Silmar Teixeira: silmarteixeira@ufpi.edu.br; Stenio Fiorelli: skfiorelli@uol.com.br; Andréa Povedano: povedanoa@hotmail.com; Pietro Novelino: pietro.novellino@hotmail.com; Camila Rodrigues Almeida: fiorellicamila@hotmail.com; Adriana Leico Oda: adrileico.oda@uol.com.br; Marcos RG de Freitas: mgdefreitas@hotmail.com; Acary Souza Bulle Oliveira acary.bulle@unifesp.br; José Teixeira de Seixas Filho: jseixas4@gmail.com; Patricia Dusek; patricia.dusek@unisuam.edu.br
Resumo
Esclerose
Lateral Amiotrófica (ELA) é uma doença degenerativa que cursa com a
deterioração dos neurônios motores. O início do comprometimento clínico pode
ser bulbar com o tempo médio de vida após os primeiros sintomas de 2 à 5 anos, apresentando sérios distúrbios de deglutição, fala
e respiração. Os transtornos de deglutição podem ocasionar desnutrição,
desidratação, aspiração, desprazer, além de complicações mais graves como a
pneumonia aspirativa e o óbito. Com a evolução da doença o paciente necessita
de procedimentos que geram dúvidas nos profissionais e nos familiares como o
momento correto de indicação do uso de vias alternativas de alimentação de
longa duração denominada gastrostomia (GTT). O objetivo desse artigo é analisar
o impacto da disfagia e o momento mais favorável para a colocação da
gastrostomia. A colocação precoce da GTT pode auxiliar a evitar que o paciente
se debilite clinicamente mais rapidamente, responda melhor as terapêuticas da
equipe multidisciplinar e tenha mais conforto.
Palavras-chave: disfagia, nutrição
enteral, gastrostomia, transtornos de deglutição, doença dos neurônios motores,
esclerose amiotrófica lateral.
Abstract
Amyotrophic
Lateral Sclerosis (ALS) is a degenerative disease that occurs with the
deterioration of motor neurons. The beginning of clinical impairment may be
bulbar with the average life time, after the first symptoms, between 2 to 5 years, presenting serious swallowing, speech and
breathing disorders. Deglutition disorders can lead to malnutrition,
dehydration, aspiration, displeasure, and more serious complications such as
aspiration pneumonia and death. With the evolution of the disease, the patient
needs procedures that generate doubts in the professionals and family, as the
correct moment of indication of the use of alternative long-term feeding routes
called gastrostomies (GTT). The objective of this article is to analyze the
impact of dysphagias and the most favorable moment for the placement of
gastrostomies. Early GTT placement may help prevent the patient from clinically
debilitating more quickly, respond better to multidisciplinary team
therapeutics, and feel more comfortable.
Key-words: dysphagia, enteral
nutrition, gastrostomy, deglutition disorders, motor neuron disease,
amyotrophic lateral sclerosis.
Amyotrophic lateral sclerosis (ALS) is a
devastating degenerative disease with a strong impact on the quality of life of
its patients and their families. After the final diagnosis, some issues are
worth taking into consideration. Oral feeding difficulties, speech disorders,
underfeeding, bronchopneumonias and the correct time to perform the long-term
alternative feeding procedure such as gastrostomies (PEG - percutaneous
endoscopic gastrostomy) and the questions that involve mechanical ventilation,
that is especially invasive due to the need of performing tracheostomy, are
issues that cause great doubts and disagreements not only for patients and
their families, but also for the professionals who
treat ALS [1]. In order to analyze the particular theme related to dysphagia,
nutrition and the most favorable moment of placement of PEG, a literary
research was carried out aiming at helping to elucidate specifically these
questions.
Amyotrophic Lateral Sclerosis (ALS) is a
neurodegenerative disease that occurs with the deterioration of motor neurons,
and the most prevalent form presents signs of injury to lower motor neurons
(amyotrophy), upper motor neurons (spasticity) and bulbar lesions causing
severe speech and deglutition disorders. The average survival time after the
onset of the first symptoms is two to five years
[1,2].
As disease progresses and patients become
more dependent, they and their families are impacted not only emotionally and
socially, but also economically. However, although there is no curative
treatment for ALS, adequate therapeutic measures capable of promoting quality
of life for patients and safety for their families are not to be ruled out, as
they are doing their best within the possibilities of
the disease [1,2].
The pleasant experience of oral feeding
involves all individuals from birth to the end of life. All societies associate
food with one of the greatest pleasures of the human being guaranteeing the
maintenance of life. Therefore, the swallowing disorders present in ALS are one
of the symptoms that cause extreme concern. Dysphagia is the difficulty in
swallowing related to the functioning of the oropharyngeal and oesophageal
structures, making it difficult or impossible to safely, effectively and
comfortably consume saliva, liquids and/or foods of any consistency, which can
lead to malnutrition, dehydration, aspiration, discomfort and social isolation,
in addition to more serious complications such as aspiration pneumonia and
death [3].
The aim of clinical treatment for dysphagia
is to provide safe deglutition through compensatory procedures, as well as
myofunctional breathing [4] and learning techniques that encourage the
proprioception, posture changes and oral deglutition maneuvers. Patients
treated since early stages can develop muscle adaptive mechanisms and reduce
the risk of tracheal aspiration even with serious muscle alterations. With the
worsening dysphagia, it is necessary to indicate PEG as an alternative route
[5].
Dysphagia has been one of the strong
predictors of PEG acceptance, especially when it causes displeasure in the
feeding [6] and in patients with a vital capacity of less than 50% [7]. Most
teams consider the PEG indication a combination of factors such as respiratory
decline, weight loss, dysphagia, and/or patient readiness [8]. However, these
parameters have been reviewed and the search for better treatments has shown
that the presence of the multidisciplinary team can prolong the life time with
more quality [9,10]. The GEP has been used as a resource that brings more
advantages to the patient who needs a medium or long
term feeding supply [11]. It is considered the gold standard procedure of
enteral nutrition in ALS [12].
Although there is no evidence that the use of
PEG prolongs the life span the procedure performed early has been directly
associated with the improvement of the patient's well-being, once it can
maintain a partial oral route.
The insertion of PEG does not necessarily
exclude oral feeding, but provides a way to administer medicines, hydration,
food supplement, with the aim to stabilize the eutrophy [13]. The patient has
autonomy to ingest food of his preference, with the consistency indicated by his
speech pathologist as safe in the continuous swallowing assessments [3] and in
the volume he wishes to ingest, since the indicated
nutritional intake will be guaranteed through PEG [9]. By using this kind of
conduct, it avoids that eating becomes a disorder with a consequent reduction
in oral intake, which causes excessive weight loss, hypermetabolism,
dehydration and malnutrition that can aggravate muscular atrophy, in addition
to compromising the respiratory condition in a more significant way and the
increase risk of other comorbidities [9,10]. Current guidelines are based on
higher rates of post-procedure PEG complications in patients with ALS with
advanced respiratory dysfunction, which led to a recommendation to perform the
procedure before the vital capacity is <50% [10]. Therefore, it is very
important to assess the patient when there is respiratory muscle weakness with
loss of vital capacity. The insertion of GEP does not offer risk to the
patient, but there is a need to make the procedure with ventilation monitoring
[4].
The multidisciplinary management is essential
in the treatment of patients with ALS. The PEG should be early, even before the
severity of dysphagia [4]. The European consensus suggests the early insertion
of PEG, even recognizing the difficulty that can be in the patient's adherence
to this idea, especially in the absence of dysphagia
[12].
The main benefits of early indication of PEG,
even before the presence of severe dysphagia, is to prevent the patient from
becoming clinically debilitated more rapidly, so as to respond better to speech
and deglutition therapies as well as of the multidisciplinary team, and
especially for the ALS patient to have a life as comfortable as possible.
References