Dysarthria and quality of life in patients with amyotrophic lateral sclerosis

Neto, Lavoisier Leite; Constantini, Ana Carolina

doi:10.1590/1982-021620171954017

Cited by 13 publications

(22 citation statements)

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“…Leite Neto and Constantini (2017) reported that a reduction in natural speech increases the risk of social withdrawal and reduced QoL with other researchers showing the changes in relationships that occur between plwMND and significant others is devastating (Gauthier et al . 2007).…”

Section: Discussionmentioning

confidence: 96%

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Voice banking for people living with motor neurone disease: Views and expectations

Cave

Bloch

2020

Intl J Lang & Comm Disor

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Background: More than 80% of people living with MND (plwMND) develop difficulties with their speech, affecting communication, self-identity and quality of life. Most plwMND eventually use an augmentative and alternative communication device (AAC) to communicate. Some AAC devices provide a synthesized voice for speech, however these voices are often viewed as impersonal and a factor in AAC acceptance. Voice banking creates an approximation of the person's own voice that can be used in AAC and is argued to go some way to preserve a person's identity when natural voice is lost, but there has been little supporting research. Aims: To understand what plwMND consider when deciding whether or not to bank their voice, what their expectations are, and the expectations of significant communication partners. Methods: Semi-structured interviews were undertaken with plwMND who had either decided to bank their voice or had decided not to. Thematic analysis was used to provide a qualitative analysis of the data. Procedures: Participants were an opportunistic sample of plwMND within England recruited via an open advert distributed by the MND Association (MNDA). Outcomes and Results: Twelve plwMND were interviewed with nine significant others. Nine participants had decided to bank their voice and three decided not to. The data suggest 'preserving identity' is the overarching motivation in decision making for voice banking. Participants who decided to voice bank considered it would help to maintain their identity and preserve their social and work networks. Participants deciding not to bank their voice highlighted it could not replace their natural voice or preserve their identity. However, few in either group showed an awareness of how a voice bank is used in AAC, and how communication using AAC is significantly different to natural speech. Conclusions and Implications: This research is the first study of its kind to examine the considerations for decision making around voice banking for plwMND. Preserving identity is central to decision making when considering whether or not to voice bank. However, the reality of using AAC and voice banking for communication is poorly understood. Professionals have a role to provide plwMND with more information about voice banking in the wider context of using AAC for communication. It may be that the process of voice banking itself is seen as a positive act for plwMND, independent of how it is used later. Further research with associated professionals and stakeholders is indicated.

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Section: Discussionmentioning

confidence: 96%

“…2012). There is evidence of a correlation between the increase in speech difficulties experienced by plwMND and a reduction in their quality of life (QoL) (Leite Neto and Constantini 2017).…”

Section: Speech and Identitymentioning

confidence: 99%

Voice banking for people living with motor neurone disease: Views and expectations

Cave

Bloch

2020

Intl J Lang & Comm Disor

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“…It is believed that there are several factors that may contribute to the onset of the disease, such as excitotoxicity by neurotransmitter glutamate, accumulation of neurofilaments, deficiency of neurotrophic factors, immunity changes, physical trauma, and persistent viral infections, as well as chemical and physical environmental factors [54]. With the progress of the disease, communication difficulties increase while sentences become simpler and shorter, culminating, in advanced phases, to answering questions through the use of keywords or “yes/no” answers [55]. These changes, together with the loss of functional independence caused by ALS, lead to an extremely discouraging situation for the individual.…”

Section: Discussionmentioning

confidence: 99%

Influence of Lineage-Negative Stem Cell Therapy on Articulatory Functions in ALS Patients

Pawlukowska

Baumert

Gołąb-Janowska

et al. 2019

Stem Cells International

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Introduction. Amyotrophic lateral sclerosis (ALS) is a fatal, neurodegenerative disease, leading to loss of muscle strength and motor control. Impaired speech and swallowing lower the quality of life and consequently may induce acute respiratory failure. Bone marrow-derived stem and progenitor cells (SPCs) may be a valuable source of trophic factors. In this study, we assessed whether adjuvant cellular therapy could affect the levels of selected neurotrophins and proinflammatory factors in the cerebrospinal fluid (CSF) and subsequently prevent the deterioration of articulation. Materials and Methods. The study group consisted of 32 patients with sporadic ALS who underwent autologous lineage-negative (Lin−) stem cell intrathecal administration to the spinal canal. Lin− cells were aspirated from the bone marrow and isolated using immunomagnetic beads and a lineage cell depletion kit. Patients were examined for articulatory functions by means of the Voice Handicap Index (VHI) questionnaire and Frenchay Dysarthria Assessment (FDA). In parallel, we carried out the analysis of selected trophic and proinflammatory factors in CSF utilizing multiplex fluorescent bead-based immunoassays. Results. Of the 32 patients who received the Lin− progenitor cell therapy, 6 (group I) showed improvement in articulatory functions, 23 remained stable (group II), and 3 deteriorated (group III) on the 28th day. The improvement was particularly noticeable in a better cough reflex, laryngeal time, and dribble reflex. A statistically significant lower level of brain-derived neurotrophic factor (BDNF) was observed on day 0 in group I compared to group II. The CSF concentrations of C-reactive protein (CRP) in group I significantly decreased 7 days after Lin− SPC transplantation. On the contrary, a significant increase in the tumor necrosis factor receptor (TNF-R) level was confirmed among patients from group I with improvement of dribble and coughing reflex, tongue movements, and respiration on the 7th day, as well as on day 28 including dribble reflex solely. Conclusions. An application of Lin− stem cells could potentate the beneficial humoral effect. The prevention of deterioration of articulatory functions in ALS patients after applying adjuvant Lin− stem cell therapy seems to be promising. Although the procedure is safe and feasible, it requires further in-depth studies.

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“…Amyotrophic Lateral Sclerosis (ALS) is a heterogeneous neurodegenerative disease that results in disorders in the motor skills, cognition and behavior, highlighting serious problems in the individual´s functional skills, thus, limiting his/her possibilities of social interaction [1][2][3] .…”

Section: Introductionmentioning

confidence: 99%

“…Speech motor disorders in individuals with ALS have been described over the years, with more intensity and frequency in those individuals who show bulbar onset symptoms 2,4 . They are present in more than 80% of the cases at some point of the disease, and 75-95% of patients lose their oral communication skills 5 .…”

Section: Introductionmentioning

confidence: 99%

Amyotrophic lateral sclerosis, dysarthria, and language disorders - type of research and approaches in different areas: an integrative literature review

2021

Self Cite

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Purpose: to identify the knowledge produced in national and international researches on speech and language disorders in Amyotrophic Lateral Sclerosis, regarding the type of research and approach in different areas. Methods: an integrative review performed on databases, using the following descriptors: Amyotrophic Lateral Sclerosis, Dysarthria, Language Disorders, Speech Production Measurement and Speech Disorders. The inclusion criteria covered articles that addressed motor speech and language disorders from 2013 to 2018, excluding duplications, and categorizing valid articles for analysis. Results: 83 articles were selected, after screening the titles and abstracts. A large scientific production from different countries and areas, mainly Speech Therapy and Neurology, was found. Most of them was clinical research (65.06%), with a main focus on speech motor disorders (42.16%), speech and language motor disorders, cognition and behavior (27.71%), and language disorders (12.06%). Conclusion: researches found were mostly clinical and aimed at determining the diagnosis of disorders in different areas of knowledge. With regard to communication, few studies have been found in Brazil, and international studies addressed high technology. The results confirmed the heterogeneous nature of the disease, which shows, in addition to motor impairment of speech, cognitive, behavioral and language impairments.

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Dysarthria and quality of life in patients with amyotrophic lateral sclerosis

Cited by 13 publications

References 13 publications

Voice banking for people living with motor neurone disease: Views and expectations

Voice banking for people living with motor neurone disease: Views and expectations

Influence of Lineage-Negative Stem Cell Therapy on Articulatory Functions in ALS Patients

Amyotrophic lateral sclerosis, dysarthria, and language disorders - type of research and approaches in different areas: an integrative literature review

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