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Management of breathlessness in people with amyotrophic lateral sclerosis : a systematic review
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Introdução: A Esclerose Lateral Amiotrófica (ELA) é uma doença neurodegenerativa incurável, sendo a dispneia um sintoma frequente que afeta a qualidade de vida (QV). A insuficiência respiratória é a sua principal causa de morte. Assim, torna-se fundamental encontrar estratégias eficazes na sua abordagem. O objectivo deste estudo é rever sistematicamente a literatura acerca das intervenções para controlar a dispneia nos doentes com ELA de um ponto de vista paliativo.
Métodos: As bases de dados utilizadas foram PUBMED, Cochrane Library and Web of Science. Não foi usado nenhum limite temporal na seleção dos artigos. Foram incluídos os estudos focados no uso da ventilação-não-invasiva (VNI), traqueostomia, cuidados paliativos (CP), abordagem multidisciplinar, serviços de suporte de dispneia, terapêuticas farmacológicas e não-farmacológicas e escalas de medição de dispneia. Os outcomes selecionados foram eficácia, segurança, melhoria na QV, benefício na sobrevivência, controlo de sintomas e prevalência de uso. O risco de viés foi avaliado usando as seguintes ferramentas: Revised Cochrane risk-of-bias tool for randomized trials (RoB2) and Joanna Briggs Institute (JBI) Critical Appraisal tools.
Resultados: Foram considerados elegíveis sete artigos. Não foi encontrada evidência robusta acerca da eficácia, segurança, sobrevivência e melhoria na QV com VNI, CP, estratégias farmacológicas e não-farmacológicas.
Discussão: A evidência encontrada aparenta apoiar os CP como estando associados ao aumento do preenchimento das diretivas antecipadas de vontade e avaliação da dispneia. Os opióides são eficazes e seguros no controlo da dispneia, mas mais estudos deverão ser realizados em doentes com ELA. A eficácia das estratégias de auto-controlo varia entre os vários doentes com ELA, o que sugere que a estratégia deverá ser individualizada. É necessária investigação adicional para avaliar a eficácia e aumento da sobrevivência com a utilização de CP, VNI estratégias farmacológicas e não-farmacológicas.
Background: Amyotrophic Lateral Sclerosis (ALS) is an incurable neurodegenerative disease in which breathlessness is a common symptom affecting quality of life (QOL), with respiratory failure being the most frequent cause of death. Therefore, is important to palliate breathlessness. This study aims to systematically review the literature on the interventions to control breathlessness in ALS from a palliative point of view. Methods: PUBMED, Cochrane Library and Web of Science databases were searched for articles with no time limit. The studies focusing on the use of non-invasive ventilation (NIV), tracheostomy, palliative care (PALLC), multidisciplinary approach, support breathlessness services, pharmacological and non-pharmacological therapies, and breathlessness measurement scales in ALS were included. The chosen outcomes were effectiveness, safety, improvement in quality of life, survival benefit, symptom control/management and prevalence of use. The risk of bias was assessed via the Revised Cochrane risk-of-bias tool for randomized trials (RoB2) and Joanna Briggs Institute (JBI) Critical Appraisal tools. Results: The search performed resulted in seven eligible studies. There was heterogeneity between the selected studies and no robust evidence was found on effectiveness, safety, survival benefit and improvement in QOL of NIV, PALLC, pharmacological and non-pharmacological therapies. Discussion: The evidence found seems to prove that PALLC is associated with increased goals of care and complete advanced-care-planning documentation and dyspnea assessment. Opioids are effective and safe to control breathlessness, but more studies need to be done in ALS patients. The efficacy of self-management strategies varies across patients with ALS suggesting an individualized approach should be adopted. More studies, namely, randomized control trials need to be done to assess the efficacy and survival benefit of PALLC, NIV, pharmacological and self-management strategies.
Background: Amyotrophic Lateral Sclerosis (ALS) is an incurable neurodegenerative disease in which breathlessness is a common symptom affecting quality of life (QOL), with respiratory failure being the most frequent cause of death. Therefore, is important to palliate breathlessness. This study aims to systematically review the literature on the interventions to control breathlessness in ALS from a palliative point of view. Methods: PUBMED, Cochrane Library and Web of Science databases were searched for articles with no time limit. The studies focusing on the use of non-invasive ventilation (NIV), tracheostomy, palliative care (PALLC), multidisciplinary approach, support breathlessness services, pharmacological and non-pharmacological therapies, and breathlessness measurement scales in ALS were included. The chosen outcomes were effectiveness, safety, improvement in quality of life, survival benefit, symptom control/management and prevalence of use. The risk of bias was assessed via the Revised Cochrane risk-of-bias tool for randomized trials (RoB2) and Joanna Briggs Institute (JBI) Critical Appraisal tools. Results: The search performed resulted in seven eligible studies. There was heterogeneity between the selected studies and no robust evidence was found on effectiveness, safety, survival benefit and improvement in QOL of NIV, PALLC, pharmacological and non-pharmacological therapies. Discussion: The evidence found seems to prove that PALLC is associated with increased goals of care and complete advanced-care-planning documentation and dyspnea assessment. Opioids are effective and safe to control breathlessness, but more studies need to be done in ALS patients. The efficacy of self-management strategies varies across patients with ALS suggesting an individualized approach should be adopted. More studies, namely, randomized control trials need to be done to assess the efficacy and survival benefit of PALLC, NIV, pharmacological and self-management strategies.
Descrição
Trabalho Final do Curso de Mestrado Integrado em Medicina, Faculdade de Medicina, Universidade de Lisboa, 2023
Palavras-chave
Cuidados paliativos Dispneia Doença do neurónio motor Esclerose Lateral Amiotrófica (ELA) Revisão sistemática