Quality of Life Perspectives of People With Amyotrophic Lateral Sclerosis and Their Caregivers

Johnson, S.; Alonso, Bryant; Faulkner, Katie; Roberts, H.; Monroe, Britton; Lehman, Leigh; Kearney, Pamalyn

doi:10.5014/ajot.2017.024828

Cited by 9 publications

(11 citation statements)

References 15 publications

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“…[25][26][27] Future research should focus on the evaluation of treatment results regarding emotional support. Johnson et al 28 stated that researches evaluating the results of treatments explore more frequently the physical symptoms rather than the cognitive and emotional areas.…”

Section: Discussionmentioning

confidence: 99%

The Unmet Needs of Patients With Progressive Neurological Diseases in the Czech Republic: A Qualitative Study

2018

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Section: Discussionmentioning

confidence: 99%

The Unmet Needs of Patients With Progressive Neurological Diseases in the Czech Republic: A Qualitative Study

2018

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“…O proximidade e o tipo de relação afetiva existente entre o cuidador e o paciente anteriormente à doença, contribuem para o processo de inserção e adaptação do cuidador neste papel. 6 Os custos associados à ELA são maiores quando comparados a outras doenças neurológicas, indicando muitas vezes a necessidade de apoio financeiro para pacientes e familiares, pois custos indiretos substanciais podem ser impulsionados pela redução da renda dos pacientes e dos cuidadores informais. 22 A correlação do Apoio Material com a subescala Mecanismos de Eficácia e de Controle, demonstra que a disponibilidade de recursos financeiros pode aumentar os aspetos que capacitam ou facilitam o cuidador a enfrentar os problemas que advêm desta ocupação.…”

Section: Discussionunclassified

“…1,2,4,5 À medida que a ELA progride, as pessoas acometidas aumentam o grau de incapacidade, solicitando maior assistência e recursos externos de apoio, em geral estes são fornecidos por um cuidador principal, que assume a responsabilidade de cuidar durante todo o processo da doença. 6 O acompanhamento da pessoa com ELA implica em uma reorganização familiar, onde algum membro assume a função do cuidado, executando atividades que podem ser esporádicas ou permanecentes.…”

Section: Introductionunclassified

Funcionalidade e qualidade de vida de pessoas com esclerose lateral amiotrófica e percepção da sobrecarga e apoio social de cuidadores informais

Gomes¹,

Zuqui²,

Schiavo³

et al. 2021

Acta Fisiátr.

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Objetivo: Esta pesquisa tem como objetivo mensurar a funcionalidade e qualidade de vida de pacientes com Esclerose Lateral Amiotrófica (ELA) e fornecer evidências sobre a possível sobrecarga de cuidados gerados aos seus cuidadores informais. Método: Trata-se de um estudo descritivo exploratório do tipo quantitativo, com delineamento transversal. A amostra do estudo foi composta por 24 participantes, sendo 12 pacientes com ELA e 12 cuidadores informais, recrutados em um Centro Especializado de Reabilitação. Foram administrados aos indivíduos com ELA os instrumentos: Questionário sobre Informações Demográficas; Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R); Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40) e aos cuidadores: Questionário de Avaliação da Sobrecarga do Cuidador Informal (QASCI); Escala de Apoio Social do Medical Outcomes Study (MOS). Resultados: Foram encontradas fortes correlações entre ALSFRS-R e ALSAQ-40 (r = - 0.709 e p < 0.010), entre o domínio Atividades de Vida Diária e a ALSFRS-R (r = - 0.877 e p < .001), entre os domínios da QASCI e MOS, Mecanismo de Eficácia e de Controle e Apoio material (r = - 0.598 e p < 0.040), Satisfação com o Papel e com o Familiar e Apoio Afetivo (r = - 0.604 e p < 0.037), e Suporte Familiar e Interação Social Positiva (r = - 0.683 e p < 0.014). Conclusão: A funcionalidade e a qualidade de vida do paciente com ELA influenciam na provisão de cuidados, o suporte social percebido foi uma variável moderadora da sobrecarga de estresse dos cuidadores.

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“…Patients with ALS who have undergone tracheostomy are at high risk of pulmonary aspiration [ 4 ]. Although these manifestations can be managed by frequently suctioning intratracheal sputum (once per hour), these procedures reduce the patient’s quality of life (QOL) and increase caregiver burden [ 5 ]. Surgery to prevent aspiration, which separates the trachea and esophagus, can be considered in addition to tracheostomy.…”

Section: Introductionmentioning

confidence: 99%

Long-term outcomes after surgery to prevent aspiration for patients with amyotrophic lateral sclerosis

et al. 2022

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Background Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects motor neurons selectively. In particular, weakness in respiratory and swallowing muscles occasionally causes aspiration pneumonia and choking, which can be lethal. Surgery to prevent aspiration, which separates the trachea and esophagus, can reduce the associated risks. Central-part laryngectomy (CPL) is a relatively minimally invasive surgery to prevent aspiration. No studies have been conducted on the long-term outcomes of surgery to prevent aspiration in patients with ALS. This case series aimed to determine the long-term outcomes of surgery to prevent aspiration and the use of a continuous low-pressure aspirator in patients with ALS by evaluating the frequency of intratracheal sputum suctions performed per day, intra- and postoperative complications, oral intake data, and satisfaction of patients and their primary caregiver to predict improvement in patients’ quality of life (QOL). Methods We report a case series of six patients with ALS who underwent CPL along with tracheostomy to prevent aspiration between January 2015 and November 2018. We evaluated their pre- and postoperative status and administered questionnaires at the time of last admission to the patients and their primary caregivers. Results The mean follow-up period after CPL was 33.5 months. Aerophagia was a common postoperative complication. The use of a continuous low-pressure aspirator resulted in reduced frequency of intratracheal sputum suctions. All cases avoided aspiration pneumonia. Oral intake was continued for 2–4 years after the tracheostomy and CPL. The satisfaction levels of the patient and primary caregiver were high. Conclusion Our case series suggests that the use of a continuous low-pressure aspirator in patients undergoing CPL improves oral intake and reduces the frequency of intratracheal sputum suctions, which improves the QOL of patients with ALS and their families and caregivers. CPL and continuous low-pressure aspiration should be considered as a management option for ALS with significant bulbar and respiratory muscle weakness/dysfunction.

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Quality of Life Perspectives of People With Amyotrophic Lateral Sclerosis and Their Caregivers

Cited by 9 publications

References 15 publications

The Unmet Needs of Patients With Progressive Neurological Diseases in the Czech Republic: A Qualitative Study

The Unmet Needs of Patients With Progressive Neurological Diseases in the Czech Republic: A Qualitative Study

Funcionalidade e qualidade de vida de pessoas com esclerose lateral amiotrófica e percepção da sobrecarga e apoio social de cuidadores informais

Long-term outcomes after surgery to prevent aspiration for patients with amyotrophic lateral sclerosis

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