Use and Perceived Effectiveness of Communication Modes Reported by Persons With Primary Progressive Aphasia.

PURPOSE: Primary progressive aphasia (PPA) is a clinical neurodegenerative dementia syndrome characterized by early, selective, and progressive language impairment. PPA onset is gradual, providing time to potentially identify additional or alternative expressive communication modes; however, reports of communication mode use and effectiveness by persons with PPA have not been described. This study characterized the use, frequency, and perceived effectiveness of communication modes reported by individuals with PPA. METHOD: Forty-one participants with mild-to-moderate PPA completed a structured interview detailing the type, frequency, and perceived effectiveness of 12 potential communication modes, categorized by technology required (no-tech, low-tech, and high-tech). The ratio of modes used was compared across technology categories with a repeated-measures generalized linear model assuming a binomial distribution with an overall Wald chi-square statistic, followed by pairwise post hoc t-test comparisons. RESULTS: Of the 12 communication modes assessed, participants reported using a median of eight (range: 5-10). All participants affirmed using speech, facial expressions, and talking on the phone. Frequency and perceived effectiveness ratings for these three modes were endorsed at the "some/most of the time" level for more than 80% of the participants. No-tech mode use was significantly higher than reported high-tech and low-tech modes (p = .004 and p < .0001, respectively). Even so, while some high-tech modes (apps) and some low-tech modes (nonelectronic augmentative and alternative communication) had fewer users, effectiveness ratings were moderate to high for all but one user. CONCLUSIONS: Persons with mild-to-moderate language impairment due to PPA report using a range of communication modes with moderate-to-high frequency and perceived effectiveness. These outcomes provide practical information when considering mode refinement or expansion during intervention to maximize communication participation. Barriers to modality use may include low awareness or access, which could be queried by future studies and supported by speech and language interventions. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.21614262.

A recent survey of augmentative and alternative communication use and service delivery experiences of people with amyotrophic lateral sclerosis in the United States.

PURPOSE: The objective of this study was to explore and describe current trends in the augmentative and alternative communication (AAC) use and service delivery experiences of people with amyotrophic lateral sclerosis (PALS) in the U.S. METHODS: Cross-sectional data were collected from 216 PALS via an anonymous online questionnaire in 2021. RESULTS: Over 70% of participants reported at least some detectable speech disturbance, and approximately half used aided communication during face-to-face interactions. Among respondents with severe speech impairment, over 90% reported using speech-generating devices, and just over half reported using low-tech AAC. Most participants had met with an SLP to discuss speech and communication, but varied in both timing of the initial intervention and frequency of ongoing intervention. Fewer than half reported that their family members or other important people had received education or support related to communication for PALS. Participants also shared their use of and experiences with telephone and video calls, access methods, mounting systems, word prediction and stored phrases, and message and voice banking. CONCLUSIONS: Results highlight the importance of early referral for AAC intervention, ongoing re-evaluation and treatment, involvement of communication partners and support for multimodal communication and adaptation to changing needs. Implications for rehabilitationMost people with amyotrophic lateral sclerosis (PALS) in this sample reported experiencing dysarthria, with 71.3% indicating at least some detectable speech disturbance (Revised ALS Functional Rating Scale [ALSFRS-R] speech rating ≤ 3) and 56.5% reporting reduced intelligibility (ALSFRS-R speech rating ≤ 2).Respondents used a wide variety of communication methods. Among respondents who were unable to meet their communication needs with speech alone, 84.6% used unaided methods (including speech), 52.3% used low-tech augmentative and alternative communication (AAC) and 90.8% used a speech-generating device.Service delivery improvements are needed to ensure timely, ongoing and comprehensive AAC education and intervention for PALS and their families.Communication over video calls (including virtual healthcare visits) is common among PALS and may be an important target for AAC intervention as the COVID-19 pandemic continues to limit in-person gatherings and appointments.

Ethical issues raised by incorporating personalized language models into brain-computer interface communication technologies: a qualitative study of individuals with neurological disease.

PURPOSE: To examine the views of individuals with neurodegenerative diseases about ethical issues related to incorporating personalized language models into brain-computer interface (BCI) communication technologies. METHODS: Fifteen semi-structured interviews and 51 online free response surveys were completed with individuals diagnosed with neurodegenerative disease that could lead to loss of speech and motor skills. Each participant responded to questions after six hypothetical ethics vignettes were presented that address the possibility of building language models with personal words and phrases in BCI communication technologies. Data were analyzed with consensus coding, using modified grounded theory. RESULTS: Four themes were identified. (1) The experience of a neurodegenerative disease shapes preferences for personalized language models. (2) An individual's identity will be affected by the ability to personalize the language model. (3) The motivation for personalization is tied to how relationships can be helped or harmed. (4) Privacy is important to people who may need BCI communication technologies. Responses suggest that the inclusion of personal lexica raises ethical issues. Stakeholders want their values to be considered during development of BCI communication technologies. CONCLUSIONS: With the rapid development of BCI communication technologies, it is critical to incorporate feedback from individuals regarding their ethical concerns about the storage and use of personalized language models. Stakeholder values and preferences about disability, privacy, identity and relationships should drive design, innovation and implementation.IMPLICATIONS FOR REHABILITATIONIndividuals with neurodegenerative diseases are important stakeholders to consider in development of natural language processing within brain-computer interface (BCI) communication technologies.The incorporation of personalized language models raises issues related to disability, identity, relationships, and privacy.People who may one day rely on BCI communication technologies care not just about usability of communication technology but about technology that supports their values and priorities.Qualitative ethics-focused research is a valuable tool for exploring stakeholder perspectives on new capabilities of BCI communication technologies, such as the storage and use of personalized language models.

A systematic review of research on augmentative and alternative communication brain-computer interface systems for individuals with disabilities.

Augmentative and alternative communication brain-computer interface (AAC-BCI) systems are intended to offer communication access to people with severe speech and physical impairment (SSPI) without requiring volitional movement. As the field moves toward clinical implementation of AAC-BCI systems, research involving participants with SSPI is essential. Research has demonstrated variability in AAC-BCI system performance across users, and mixed results for comparisons of performance for users with and without disabilities. The aims of this systematic review were to (1) describe study, system, and participant characteristics reported in BCI research, (2) summarize the communication task performance of participants with disabilities using AAC-BCI systems, and (3) explore any differences in performance for participants with and without disabilities. Electronic databases were searched in May, 2018, and March, 2021, identifying 6065 records, of which 73 met inclusion criteria. Non-experimental study designs were common and sample sizes were typically small, with approximately half of studies involving five or fewer participants with disabilities. There was considerable variability in participant characteristics, and in how those characteristics were reported. Over 60% of studies reported an average selection accuracy ≤70% for participants with disabilities in at least one tested condition. However, some studies excluded participants who did not reach a specific system performance criterion, and others did not state whether any participants were excluded based on performance. Twenty-nine studies included participants both with and without disabilities, but few reported statistical analyses comparing performance between the two groups. Results suggest that AAC-BCI systems show promise for supporting communication for people with SSPI, but they remain ineffective for some individuals. The lack of standards in reporting outcome measures makes it difficult to synthesize data across studies. Further research is needed to demonstrate efficacy of AAC-BCI systems for people who experience SSPI of varying etiologies and severity levels, and these individuals should be included in system design and testing. Consensus in terminology and consistent participant, protocol, and performance description will facilitate the exploration of user and system characteristics that positively or negatively affect AAC-BCI use, and support innovations that will make this technology more useful to a broader group of people. Clinical trial registration: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42018095345, PROSPERO: CRD42018095345.

Methodology and preliminary data on feasibility of a neurofeedback protocol to improve visual attention to letters in mild Alzheimer's disease.

Background: Brain-computer interface (BCI) systems are controlled by users through neurophysiological input for a variety of applications, including communication, environmental control, and motor rehabilitation. Although individuals with severe speech and physical impairment are the primary users of this technology, BCIs have emerged as a potential tool for broader populations, including delivering cognitive training/interventions with neurofeedback (NFB). Methods: This paper describes the development and preliminary testing of a protocol for use of a BCI system with NFB as an intervention for people with mild Alzheimer's disease (AD). The intervention focused on training visual attention and language skills, as AD is often associated with functional impairments in both. This funded pilot study called for enrolling five participants with mild AD in a six-week BCI EEG-based NFB intervention that followed a four-to-seven-week baseline phase. While two participants completed the study, the remaining three participants could not complete the intervention phase because of COVID-19 restrictions. Results: Preliminary pilot results suggested: (1) participants with mild AD were able to participate in a study with multiple assessments per week and complete all outcome measures, (2) most outcome measures were reliable during the baseline phase, and (3) all participants with mild AD learned to operate a BCI spelling system with training. Conclusions: Although preliminary results demonstrate practical feasibility to deliver NFB intervention using a BCI to adults with AD, completion of the protocol in its entirety with more participants is needed to further assess whether implementing NFB-based cognitive intervention is justified by functional treatment outcomes. Trial registration: This study was registered with ClinicalTrials.gov (NCT03790774).

Communication Bridge™-2 (CB2): an NIH Stage 2 randomized control trial of a speech-language intervention for communication impairments in individuals with mild to moderate primary progressive aphasia.

BACKGROUND: Primary progressive aphasia (PPA) is a clinical dementia syndrome. Impairments in language (speaking, reading, writing, and understanding) are the primary and persistent symptoms. These impairments progress insidiously and devastate communication confidence, participation, and quality of life for persons living with PPA. Currently, there are no effective disease modifying treatments for PPA. Speech-language interventions hold promise for mitigating communication challenges and language symptoms. However, evidence regarding their efficacy in PPA is of low quality and there are currently no rigorous randomized trials. METHOD: Communication Bridge™-2 (CB2) is a Stage 2, superiority, single-blind, randomized, parallel group, active-control, behavioral clinical trial delivered virtually within a telehealth service delivery model to individuals with PPA. Ninety carefully characterized participants with clinically confirmed PPA will be randomized to one of two speech-language intervention arms: (1) Communication Bridge™ a dyadic intervention based in communication participation therapy models that incorporates salient training stimuli or (2) the control intervention a non-dyadic intervention based in impairment therapy models addressing word retrieval and language production that incorporates fixed stimuli. The superiority of Communication Bridge™ over the Control arm will be evaluated using primary outcomes of communication confidence and participation. Other outcomes include accuracy for trained words and scripts. Participants complete two therapy blocks over a 12-month period. Outcomes will be measured at baseline, at each therapy block, and at 12 months post enrollment. DISCUSSION: The CB2 trial will supply Level 2 evidence regarding the efficacy of the Communication Bridge™ intervention delivered in a telehealth service delivery model for individuals with mild to moderate PPA. An important by-product of the CB2 trial is that these data can be used to evaluate the efficacy of speech-language interventions delivered in both trial arms for persons with PPA. The impact of these data should not be overlooked as they will yield important insights examining why interventions work and for whom, which will advance effectiveness trials for speech-language interventions in PPA. TRIAL REGISTRATION: ClinicalTrials.gov NCT03371706 . Registered prospectively on December 13, 2017.

Feedback Related Potentials for EEG-Based Typing Systems.

Error related potentials (ErrP), which are elicited in the EEG in response to a perceived error, have been used for error correction and adaption in the event related potential (ERP)-based brain computer interfaces designed for typing. In these typing interfaces, ERP evidence is collected in response to a sequence of stimuli presented usually in the visual form and the intended user stimulus is probabilistically inferred (stimulus with highest probability) and presented to the user as the decision. If the inferred stimulus is incorrect, ErrP is expected to be elicited in the EEG. Early approaches to use ErrP in the design of typing interfaces attempt to make hard decisions on the perceived error such that the perceived error is corrected and either the sequence of stimuli are repeated to obtain further ERP evidence, or without further repetition the stimulus with the second highest probability is presented to the user as the decision of the system. Moreover, none of the existing approaches use a language model to increase the performance of typing. In this work, unlike the existing approaches, we study the potential benefits of fusing feedback related potentials (FRP), a form of ErrP, with ERP and context information (language model, LM) in a Bayesian fashion to detect the user intent. We present experimental results based on data from 12 healthy participants using RSVP Keyboard™ to complete a copy-phrase-task. Three paradigms are compared: [P1] uses only ERP/LM Bayesian fusion; [P2] each RSVP sequence is appended with the top candidate in the alphabet according to posterior after ERP evidence fusion; corresponding FRP is then incorporated; and [P3] the top candidate is shown as a prospect to generate FRP evidence only if its posterior exceeds a threshold. Analyses indicate that ERP/LM/FRP evidence fusion during decision making yields significant speed-accuracy benefits for the user.

SSVEP BCI and Eye Tracking Use by Individuals With Late-Stage ALS and Visual Impairments.

Access to communication is critical for individuals with late-stage amyotrophic lateral sclerosis (ALS) and minimal volitional movement, but they sometimes present with concomitant visual or ocular motility impairments that affect their performance with eye tracking or visual brain-computer interface (BCI) systems. In this study, we explored the use of modified eye tracking and steady state visual evoked potential (SSVEP) BCI, in combination with the Shuffle Speller typing interface, for this population. Two participants with late-stage ALS, visual impairments, and minimal volitional movement completed a single-case experimental research design comparing copy-spelling performance with three different typing systems: (1) commercially available eye tracking communication software, (2) Shuffle Speller with modified eye tracking, and (3) Shuffle Speller with SSVEP BCI. Participant 1 was unable to type any correct characters with the commercial system, but achieved accuracies of up to 50% with Shuffle Speller eye tracking and 89% with Shuffle Speller BCI. Participant 2 also had higher maximum accuracies with Shuffle Speller, typing with up to 63% accuracy with eye tracking and 100% accuracy with BCI. However, participants' typing accuracy for both Shuffle Speller conditions was highly variable, particularly in the BCI condition. Both the Shuffle Speller interface and SSVEP BCI input show promise for improving typing performance for people with late-stage ALS. Further development of innovative BCI systems for this population is needed.

Human visual skills for brain-computer interface use: a tutorial.

Background and objectives: Many brain-computer interfaces (BCIs) for people with severe disabilities present stimuli in the visual modality with little consideration of the visual skills required for successful use. The primary objective of this tutorial is to present researchers and clinical professionals with basic information about the visual skills needed for functional use of visual BCIs, and to offer modifications that would render BCI technology more accessible for persons with vision impairments.Methods: First, we provide a background on BCIs that rely on a visual interface. We then describe the visual skills required for BCI technologies that are used for augmentative and alternative communication (AAC), as well as common eye conditions or impairments that can impact the user's performance. We summarize screening tools that can be administered by the non-eye care professional in a research or clinical setting, as well as the role of the eye care professional. Finally, we explore potential BCI design modifications to compensate for identified functional impairments. Information was generated from literature review and the clinical experience of vision experts.Results and conclusions: This in-depth description culminates in foundational information about visual skills and functional visual impairments that affect the design and use of visual interfaces for BCI technologies. The visual interface is a critical component of successful BCI systems. We can determine a BCI system for potential users with visual impairments and design BCI visual interfaces based on sound anatomical and physiological visual clinical science.Implications for RehabilitationAs brain-computer interfaces (BCIs) become possible access methods for people with severe motor impairments, it is critical that clinicians have a basic knowledge of the visual skills necessary for use of visual BCI interfaces.Rehabilitation providers must have a knowledge of objectively gathering information regarding a potential BCI user's functional visual skills.Rehabilitation providers must understand how to modify BCI visual interfaces for the potential user with visual impairments.Rehabilitation scientists should understand the visual demands of BCIs as they develop and evaluate these new access methods.

Robust Fusion of c-VEP and Gaze.

Brain computer interfaces (BCIs) are one of the developing technologies, serving as a communication interface for people with neuromuscular disorders. Electroencephalography (EEG) and gaze signals are among the commonly used inputs for the user intent classification problem arising in BCIs. Fusing different types of input modalities, i.e. EEG and gaze, is an obvious but effective solution for achieving high performance on this problem. Even though there are some simplistic approaches for fusing these two evidences, a more effective method is required for classification performances and speeds suitable for real-life scenarios. One of the main problems that is left unrecognized is highly noisy real-life data. In the context of the BCI framework utilized in this work, noisy data stem from user error in the form of tracking a nontarget stimuli, which in turn results in misleading EEG and gaze signals. We propose a method for fusing aforementioned evidences in a probabilistic manner that is highly robust against noisy data. We show the performance of the proposed method on real EEG and gaze data for different configurations of noise control variables. Compared to the regular fusion method, robust method achieves up to 15% higher classification accuracy.

Challenges and opportunities in augmentative and alternative communication: Research and technology development to enhance communication and participation for individuals with complex communication needs.

The field of augmentative and alternative communication (AAC) has witnessed significant changes since its inception. AAC services are now considered for a much greater number of individuals with complex communication needs and there are many more AAC options available as communication supports, including a proliferation of technologies. The scope and options for communication within society have increased substantially to include a wide array of digital and social media. Individuals with complex communication needs have increased expectations for participation and engagement across a full range of environments-education, employment, family, healthcare, and community living. Despite these advances, there remain critical challenges that must be addressed. This paper discusses key advances in the AAC field, delineates challenges, and discusses future directions to address these challenges, specifically as they relate to research and development to enhance AAC interventions and technologies for individuals with complex communication needs and their families.

New and emerging access technologies for adults with complex communication needs and severe motor impairments: State of the science.

Individuals with complex communication needs often use alternative access technologies to control their augmentative and alternative communication (AAC) devices, their computers, and mobile technologies. While a range of access devices is available, many challenges continue to exist, particularly for those with severe motor-control limitations. For some, access options may not be readily available or access itself may be inaccurate and frustrating. For others, access may be available but only under optimal conditions and support. There is an urgent need to develop new options for individuals with severe motor impairments and to leverage existing technology to improve efficiency, increase accuracy, and decrease fatigue of access. This paper describes person-centred research and development activities related to new and emerging access technologies, with a particular focus on adults with acquired neurological conditions.

Trends in research participant categories and descriptions in abstracts from the International BCI Meeting series, 1999 to 2016.

Much brain-computer interface (BCI) research is intended to benefit people with disabilities (PWD), but inclusion of these individuals as study participants remains relatively rare. When participants with disabilities are included, they are described with a range of clinical and non-clinical terms with varying degrees of specificity, often leading to difficulty in interpreting or replicating results. This study examined trends in inclusion and description of study participants with disabilities across six International BCI Meetings from 1999 to 2016. Abstracts from each Meeting were analyzed by two trained independent reviewers. Results suggested a decline in participation by PWD across Meetings until the 2016 Meeting. Increased diagnostic specificity was noted at the 2013 and 2016 Meetings. Fifty-eight percent of the abstracts identified PWD as being the target beneficiaries of BCI research, though only twenty-two percent included participants with disabilities, suggesting evidence of a persistent translational gap. Participants with disabilities were most commonly described as having physical and/or communication impairments compared to impairments in other areas. Implementing participatory action research principles and user-centered design strategies continues to be necessary within BCI research to bridge the translational gap and facilitate use of BCI systems within functional environments for PWD.

Group Communication Treatment for Individuals with PPA and Their Partners.

Primary progressive aphasia (PPA) is a neurodegenerative syndrome characterized by insidious language deterioration. This young-onset disorder leaves adults with reduced communication skills for participation in social activities. There is limited evidence regarding group treatment for individuals with PPA, though the principles of chronic aphasia groups can be applied to this clinical population. We developed a PPA group treatment model incorporating compensatory strategies from augmentative and alternative communication (AAC), communication partner training from aphasia rehabilitation, and systematic instruction from dementia management. Six modules were designed and delivered to people with PPA and their communication partners in a university clinic setting over a 6-week period. Treatment was provided by graduate clinicians with supervision from a certified speech-language pathologist and faculty member. Primary treatment goals were to provide education about PPA symptoms and progression; to increase practice and use of multimodal communication by people with PPA; and to establish an environment where people with PPA and their partners could connect for training and support. We present pre/post comparisons and satisfaction data provided by five individuals with PPA and their partners in the group. Results suggest that group training is an effective service delivery model. Participants reported gains in both knowledge about PPA and in using many different modalities to communicate. The new compensatory strategies learned provide tools for maintenance and improvement of language use. Participants saw increased confidence and participation in daily activities, and highlighted the value of the PPA group for individuals with this relatively rare condition and their family members.

Effects of simulated visual acuity and ocular motility impairments on SSVEP brain-computer interface performance: An experiment with Shuffle Speller.

Individuals with severe speech and physical impairments may have concomitant visual acuity impairments (VAI) or ocular motility impairments (OMI) impacting visual BCI use. We report on the use of the Shuffle Speller typing interface for an SSVEP BCI copy-spelling task under three conditions: simulated VAI, simulated OMI, and unimpaired vision. To mitigate the effect of visual impairments, we introduce a method that adaptively selects a user-specific trial length to maximize expected information transfer rate (ITR); expected ITR is shown to closely approximate the rate of correct letter selections. All participants could type under the unimpaired and simulated VAI conditions, with no significant differences in typing accuracy or speed. Most participants (31 of 37) could not type under the simulated OMI condition; some achieved high accuracy but with slower typing speeds. Reported workload and discomfort were low, and satisfaction high, under the unimpaired and simulated VAI conditions. Implications and future directions to examine effect of visual impairment on BCI use is discussed.

Vigilance state fluctuations and performance using brain-computer interface for communication.

The effect of fatigue and drowsiness on brain-computer interface (BCI) performance was evaluated. 20 healthy participants performed a standardized 11-minute calibration of a Rapid Serial Visual Presentation BCI system five times over two hours. For each calibration, BCI performance was evaluated using area under the receiver operating characteristic curve (AUC). Self-rated measures were obtained following each calibration including the Karolinska Sleepiness Scale and a standardized boredom scale. Physiological measures were obtained during each calibration including P300 amplitude, theta power, alpha power, median power frequency and eye-blink rate. There was a significant decrease in AUC over the five sessions. This was paralleled by increases in self-rated sleepiness and boredom and decreases in P300 amplitude. Alpha power, median power frequency, and eye-blink rate also increased but more modestly. AUC changes were only partly explained by changes in P300 amplitude. There was a decrease in BCI performance over time that related to increases in sleepiness and boredom. This worsened performance was only partly explained by decreases in P300 amplitude. Thus, drowsiness and boredom have a negative impact on BCI performance. Increased BCI performance may be possible by developing physiological measures to provide feedback to the user or to adapt the classifier to state.

Rehabilitation research at the National Institutes of Health moving the field forward (executive summary).

Approximately 53 million Americans live with a disability. For decades, the National Institutes of Health (NIH) has been conducting and supporting research to discover new ways to minimize disability and enhance the quality of life of people with disabilities. After the passage of the Americans With Disabilities Act, NIH established the National Center for Medical Rehabilitation Research, with the goal of developing and implementing a rehabilitation research agenda. Currently, 17 institutes and centers at NIH invest more than $500 million per year in rehabilitation research. Recently, the director of NIH, Francis Collins, appointed a Blue Ribbon Panel to evaluate the status of rehabilitation research across institutes and centers. As a follow-up to the work of that panel, NIH recently organized a conference, "Rehabilitation Research at NIH: Moving the Field Forward." This report is a summary of the discussions and proposals that will help guide rehabilitation research at NIH in the near future. (PsycINFO Database Record

Rehabilitation Research at the National Institutes of Health:: Moving the Field Forward (Executive Summary).

Approximately 53 million Americans live with a disability. For decades, the National Institutes of Health (NIH) has been conducting and supporting research to discover new ways to minimize disability and enhance the quality of life of people with disabilities. After the passage of the American With Disabilities Act, the NIH established the National Center for Medical Rehabilitation Research with the goal of developing and implementing a rehabilitation research agenda. Currently, a total of 17 institutes and centers at NIH invest more than $500 million per year in rehabilitation research. Recently, the director of NIH, Dr Francis Collins, appointed a Blue Ribbon Panel to evaluate the status of rehabilitation research across institutes and centers. As a follow-up to the work of that panel, NIH recently organized a conference under the title "Rehabilitation Research at NIH: Moving the Field Forward." This report is a summary of the discussions and proposals that will help guide rehabilitation research at NIH in the near future.This article is being published almost simultaneously in the following six journals: American Journal of Occupational Therapy, American Journal of Physical Medicine and Rehabilitation, Archives of Physical Medicine and Rehabilitation, Neurorehabilitation and Neural Repair, Physical Therapy, and Rehabilitation Psychology. Citation information is as follows: Frontera WR, Bean JF, Damiano D, et al. Am J Phys Med Rehabil. 2017;97(4):393-403.