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

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. What this paper adds What is already known on this subject 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. There is significant and growing interest in voice banking from the MND community, but there has been little supporting research. What this study adds This research is the first study of its kind to examine decision making surrounding voice banking. It shows how preserving identity is critically important in how people deal with a diagnosis of MND. For those choosing to voice bank, it is seen as an effective way of preserving their identity, a way of 'fighting back' and giving a positive psychological benefit. Those deciding against voice banking do not believe it could maintain their identity and cannot bring back the natural voice they once had. Clinical implications of this study The reality of using AAC and voice banking for communication may be poorly understood. It would be helpful for professionals to provide information about voice banking as part of a wider discussion about the range of options for communication as the condition progresses. It is important that this includes the opportunity to listen to a voice bank to support understanding of how it is used in a communication device, and how different it sounds to natural speech.

The Question of Data Integrity in Article-Level Metrics.

Interest in and use of article-level metrics (ALMs) has grown rapidly amongst the research community, by researchers, publishers, funders, and research institutions. As this happens, it is critical to ensure secure and reliable data that is trustworthy and can be used by all. Two case studies are presented, which illustrate different approaches to establishing ALM data integrity.

Automatic Speech Recognition of Conversational Speech in Individuals With Disordered Speech.

PURPOSE: This study examines the effectiveness of automatic speech recognition (ASR) for individuals with speech disorders, addressing the gap in performance between read and conversational ASR. We analyze the factors influencing this disparity and the effect of speech mode-specific training on ASR accuracy. METHOD: Recordings of read and conversational speech from 27 individuals with various speech disorders were analyzed using both (a) one speaker-independent ASR system trained and optimized for typical speech and (b) multiple ASR models that were personalized to the speech of the participants with disordered speech. Word error rates were calculated for each speech model, read versus conversational, and subject. Linear mixed-effects models were used to assess the impact of speech mode and disorder severity on ASR accuracy. We investigated nine variables, classified as technical, linguistic, or speech impairment factors, for their potential influence on the performance gap. RESULTS: We found a significant performance gap between read and conversational speech in both personalized and unadapted ASR models. Speech impairment severity notably impacted recognition accuracy in unadapted models for both speech modes and in personalized models for read speech. Linguistic attributes of utterances were the most influential on accuracy, though atypical speech characteristics also played a role. Including conversational speech samples in model training notably improved recognition accuracy. CONCLUSIONS: We observed a significant performance gap in ASR accuracy between read and conversational speech for individuals with speech disorders. This gap was largely due to the linguistic complexity and unique characteristics of speech disorders in conversational speech. Training personalized ASR models using conversational speech significantly improved recognition accuracy, demonstrating the importance of domain-specific training and highlighting the need for further research into ASR systems capable of handling disordered conversational speech effectively.

The use of speech recognition technology by people living with amyotrophic lateral sclerosis: a scoping review.

BACKGROUND: More than 80% of people living with Amyotrophic Lateral Sclerosis (plwALS) develop difficulties with their speech, affecting communication, self-identity and quality of life. Automatic speech recognition technology (ASR) is becoming a common way to interact with a broad range of devices, to find information and control the environment.ASR can be problematic for people with acquired neurogenic motor speech difficulties (dysarthria). Given that the field is rapidly developing, a scoping review is warranted. AIMS: This study undertakes a scoping review on the use of ASR technology by plwALS and identifies research gaps in the existing literature. MATERIALS AND METHODS: Electronic databases and relevant grey literature were searched from 1990 to 2020. Eleven research papers and articles were identified that included participants living with ALS using ASR technology. Relevant data were extracted from the included sources, and a narrative summary of the findings presented.Outcomes and Results: Eleven publications used recordings of plwALS to assess word recognition rate (WRR) word error rate (WER) or phoneme error rate (PER) and appropriacy of responses by ASR devices. All were found to be linked to severity of dysarthria and the ASR technology used. One article examined how speech modification may improve ASR accuracy. The final article completed thematic analysis of Amazon.com reviews for the Amazon Echo and plwALS were reported to use ASR devices to control the environment and summon assistance. CONCLUSIONS: There are gaps in the evidence base: understanding expectations of plwALS and how they use ASR technology; how WER/PER/WRR relates to usability; how ASR use changes as ALS progresses.Implications for rehabilitationDevices that people can interact with using speech are becoming ubiquitous. As movement and mobility are likely to be affected by ALS and progress over time, speech interaction could be very helpful for accessing information and environmental control.However, many people living with ALS (plwALS) also have impaired speech (dysarthria) and experience trouble using voice interaction technology because it may not understand them.Although advances in automated speech recognition (ASR) technology promise better understanding of dysarthric speech, future research needs to investigate how plwALS use ASR, how accurate it needs to be to be functionally useful, and how useful it may be over time as the disease progresses.

Acceptance and Commitment Therapy for people living with motor neuron disease: an uncontrolled feasibility study.

BACKGROUND: Motor neuron disease (MND) is a fatal, progressive neurodegenerative disease that causes progressive weakening and wasting of limb, bulbar, thoracic and abdominal muscles. Clear evidence-based guidance on how psychological distress should be managed in people living with MND (plwMND) is lacking. Acceptance and Commitment Therapy (ACT) is a form of psychological therapy that may be particularly suitable for this population. However, to the authors' knowledge, no study to date has evaluated ACT for plwMND. Consequently, the primary aim of this uncontrolled feasibility study was to examine the feasibility and acceptability of ACT for improving the psychological health of plwMND. METHODS: PlwMND aged ≥ 18 years were recruited from 10 UK MND Care Centres/Clinics. Participants received up to 8 one-to-one ACT sessions, developed specifically for plwMND, plus usual care. Co-primary feasibility and acceptability outcomes were uptake (≥ 80% of the target sample [N = 28] recruited) and initial engagement with the intervention (≥ 70% completing ≥ 2 sessions). Secondary outcomes included measures of quality of life, anxiety, depression, disease-related functioning, health status and psychological flexibility in plwMND and quality of life and burden in caregivers. Outcomes were assessed at baseline and 6 months. RESULTS: Both a priori indicators of success were met: 29 plwMND (104%) were recruited and 76% (22/29) attended ≥ 2 sessions. Attrition at 6-months was higher than anticipated (8/29, 28%), but only two dropouts were due to lack of acceptability of the intervention. Acceptability was further supported by good satisfaction with therapy and session attendance. Data were possibly suggestive of small improvements in anxiety and psychological quality of life from baseline to 6 months in plwMND, despite a small but expected deterioration in disease-related functioning and health status. CONCLUSIONS: There was good evidence of acceptability and feasibility. Limitations included the lack of a control group and small sample size, which complicate interpretation of findings. A fully powered RCT to evaluate the clinical and cost-effectiveness of ACT for plwMND is underway. TRIAL REGISTRATION: The study was pre-registered with the ISRCTN Registry (ISRCTN12655391).

Nature of alpha and beta particles in glycogen using molecular size distributions.

Glycogen is a randomly hyperbranched glucose polymer. Complex branched polymers have two structural levels: individual branches and the way these branches are linked. Liver glycogen has a third level: supramolecular clusters of beta particles which form larger clusters of alpha particles. Size distributions of native glycogen were characterized using size exclusion chromatography (SEC) to find the number and weight distributions and the size dependences of the number- and weight-average masses. These were fitted to two distinct randomly joined reference structures, constructed by random attachment of individual branches and as random aggregates of beta particles. The z-average size of the alpha particles in dimethylsulfoxide does not change significantly with high concentrations of LiBr, a solvent system that would disrupt hydrogen bonding. These data reveal that the beta particles are covalently bonded to form alpha particles through a hitherto unsuspected enzyme process, operative in the liver on particles above a certain size range.

Extracting physically useful information from multiple-detection size-separation data for starch.

A method for interpreting multiple-detection size separation data of complex branched homopolymers [Konkolewicz, D.; Gilbert, R. G.; Gray-Weale, A. Phys. Rev. Lett. 2007, 98, 238301] is applied to starch. The method, whose application is described in detail, uses the sample's weight and number distributions over polymer sizes, along with the molecular weight distribution of the individual branches (or their average degree of polymerization). The branch-length and number size distributions are used to generate the weight distribution of a hypothetical molecule with the same branch-length and number distributions but where the branches are randomly joined; this reference weight distribution is then compared to the actual one. The method is applied to size-exclusion chromatography (SEC) data for starch from a particular rice variety, the first time such data have been reported for a native starch. Comparison with the randomly branched reference function shows that the amylopectin component is consistent with random branching on the distance scale of this measurement, 10(2)-10(3) nm. This implies that on the size scale commensurate with that of a whole amylopectin chain, branching is pseudorandom, even though there is nonrandom branching on the much smaller scale of individual branches and clusters.

Characterization of starch by size-exclusion chromatography: the limitations imposed by shear scission.

Shear degradation is examined in size-exclusion chromatography (SEC, or GPC) of native starch in an eluent system (dimethylsulfoxide and LiBr) in which the starch is completely dissolved. Changes in apparent size distribution with flow rate suggested extensive shear scission of the amylopectin region. For smaller sizes, largely amylose, there was no significant scission for lower flow rates. Quantification by analogy to shear breakup of dispersed droplets gives a scaling law for conditions for shear scission of highly branched polymers. This shows both that it is impossible to obtain reliable size distributions for the amylopectin component of starch using current SEC technology and also that the amylose region is not significantly polluted by degraded amylopectin for lower flow rates. Hence, the complete size distribution of starch can only be obtained with SEC for smaller sizes (largely amylose), plus a size-separation technique with very low shear, such as field-flow fractionation, for the amylopectin region.

A flow system for the on-line quantitative measurement of the retention of dosage forms on biological surfaces using spectroscopy and image analysis.

Measuring the retention, or residence time, of dosage forms to biological tissue is commonly a qualitative measurement, where no real values to describe the retention can be recorded. The result of this is an assessment that is dependent upon a user's interpretation of visual observation. This research paper outlines the development of a methodology to quantitatively measure, both by image analysis and by spectrophotometric techniques, the retention of material to biological tissues, using the retention of polymer solutions to ocular tissue as an example. Both methods have been shown to be repeatable, with the spectrophotometric measurement generating data reliably and quickly for further analysis.

Enhanced viability of corneal epithelial cells for efficient transport/storage using a structurally modified calcium alginate hydrogel.

AIMS: Therapeutic limbal epithelial stem cells could be managed more efficiently if clinically validated batches were transported for 'on-demand' use. MATERIALS & METHODS: In this study, corneal epithelial cell viability in calcium alginate hydrogels was examined under cell culture, ambient and chilled conditions for up to 7 days. RESULTS: Cell viability improved as gel internal pore size increased, and was further enhanced with modification of the gel from a mass to a thin disc. Ambient storage conditions were optimal for supporting cell viability in gel discs. Cell viability in gel discs was significantly enhanced with increases in pore size mediated by hydroxyethyl cellulose. CONCLUSION: Our novel methodology of controlling alginate gel shape and pore size together provides a more practical and economical alternative to established corneal tissue/cell storage methods.