Effects of Aided Communication on Communicative Participation for People With Amyotrophic Lateral Sclerosis.

PURPOSE: Many people with amyotrophic lateral sclerosis (PALS) experience speech changes, which may interfere with participation in communication situations. This study was designed to investigate the effects of aided communication on self-rated communicative participation among PALS and the relationship between speech function and communicative participation for PALS at various stages of speech impairment and communication aid use. METHOD: Participants with amyotrophic lateral sclerosis completed an online questionnaire in which they identified their current communication methods, rated their speech function, and rated their communicative participation in various situations on a modified version of the Communicative Participation Item Bank short form. PALS who reported using aided communication rated their communicative participation under two conditions: with unaided communication only and with access to all of their communication methods. RESULTS: Communication aids appeared to support communicative participation for many participants with dysarthria. Across all levels of speech function, PALS who use aided communication reported better participation under the all-methods condition than the unaided-only condition, with the largest benefits for participants with anarthria (Revised ALS Functional Rating Scale [ALSFRS-R] speech rating = 0). Communicative participation ratings worsened with more severe speech impairment under both conditions for most levels of speech function, but PALS with anarthria (ALSFRS-R speech rating = 0) reported better participation under the all-methods condition than those who used residual speech in combination with non speech methods (ALSFRS-R speech rating = 1). CONCLUSIONS: Aided communication can help PALS continue to participate in various communication situations as their speech function deteriorates. Variability in self-rated communicative participation, even for PALS at the same level of speech function, highlights the need for an individualized approach and consideration of personal and environmental factors in augmentative and alternative communication intervention. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.22782986.

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.

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).

Compassion, communication, and the perception of control: a mixed methods study to investigate patients' perspectives on clinical practices for alleviating distress and promoting empowerment during awake craniotomies.

PURPOSE: To inquire into clinical practices perceived to mitigate patients' intraoperative distress during awake craniotomies. METHODS: This mixed-methods study involved administration of Amsterdam Preoperative Anxiety and Information Scale and PTSD Checklist prior to the awake craniotomy to evaluate anxiety and information-seeking related to the procedure and symptoms of PTSD. Generalized Anxiety Disorder Scale and Depression Module of the Patient Health Questionnaire were administered before and after the procedure to evaluate generalized anxiety and depression. Patient interviews were conducted 2-weeks postprocedure and included a novel set of patient experience scales to assess patients' recollection of intraoperative pain, overall distress, anxiety, distress due to noise, perception of empowerment, perception of being well-prepared, overall satisfaction with anaesthesia management, and overall satisfaction with the procedure. Qualitative data were analysed using conventional content analysis. RESULTS: Participants (n = 14) had undergone an awake craniotomy for tissue resection due to primary brain tumours or medically-refractory focal epilepsy. Validated self-report questionnaires demonstrated reduced levels of generalized anxiety (pre mean = 8.66; SD = 6.41; post mean= 4.36; SD = 4.24) following the awake craniotomy. Postprocedure interviews revealed very high satisfaction with the awake craniotomy and anaesthesia management and minimal levels of intraoperative pain, anxiety, and distress. The most stressful aspects of the procedure included global recognition of medical diagnosis, anxiety provoked by unfamiliar sights, sounds, and sensations, a perception of a lack of information or misinformation, and long periods of immobility. Important factors in alleviating intraoperative distress included the medical team's ability to promote patient perceptions of control, establish compassionate relationships, address unfamiliar intraoperative sensations, and deliver effective anaesthesia management. CONCLUSION: Compassion, communication, and patient perception of control were critical in mitigating intraoperative distress. Clinical practice recommendations with implications for all clinicians involved in patient care during awake craniotomies are provided. Use of these interventions and strategies to reduce distress are important to holistic patient care and patient experiences of care and may improve the likelihood of optimal brain mapping procedures to improve clinical outcomes during awake craniotomies.

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.

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.

Workshops of the Seventh International Brain-Computer Interface Meeting: Not Getting Lost in Translation.

The Seventh International Brain-Computer Interface (BCI) Meeting was held May 21-25th, 2018 at the Asilomar Conference Grounds, Pacific Grove, California, United States. The interactive nature of this conference was embodied by 25 workshops covering topics in BCI (also called brain-machine interface) research. Workshops covered foundational topics such as hardware development and signal analysis algorithms, new and imaginative topics such as BCI for virtual reality and multi-brain BCIs, and translational topics such as clinical applications and ethical assumptions of BCI development. BCI research is expanding in the diversity of applications and populations for whom those applications are being developed. BCI applications are moving toward clinical readiness as researchers struggle with the practical considerations to make sure that BCI translational efforts will be successful. This paper summarizes each workshop, providing an overview of the topic of discussion, references for additional information, and identifying future issues for research and development that resulted from the interactions and discussion at the workshop.

Ethical Considerations in Ending Exploratory Brain-Computer Interface Research Studies in Locked-in Syndrome.

Brain-computer interface (BCI) is a promising technology for restoring communication in individuals with locked-in syndrome (LIS). BCI technology offers a potential tool for individuals with impaired or absent means of effective communication to use brain activity to control an output device such as a computer keyboard. Exploratory studies of BCI devices for communication in people with LIS are underway. Research with individuals with LIS presents not only technological challenges, but ethical challenges as well. Whereas recent attention has been focused on ethical issues that arise at the initiation of studies, such as how to obtain valid consent, relatively little attention has been given to issues at the conclusion of studies. BCI research in LIS highlights one such challenge: How to decide when an exploratory BCI research study should end. In this article, we present the case of an individual with presumed LIS enrolled in an exploratory BCI study. We consider whether two common ethical frameworks for stopping randomized clinical trials-equipoise and nonexploitation-can be usefully applied to elucidating researcher obligations to end exploratory BCI research. We argue that neither framework is a good fit for exploratory BCI research. Instead, we apply recent work on clinician-researcher fiduciary obligations and in turn offer some preliminary recommendations for BCI researchers on how to end exploratory BCI studies.

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.

SOLICITING BCI USER EXPERIENCE FEEDBACK FROM PEOPLE WITH SEVERE SPEECH AND PHYSICAL IMPAIRMENTS.

Brain-computer interface (BCI) researchers have shown increasing interest in soliciting user experience (UX) feedback, but the severe speech and physical impairments (SSPI) of potential users create barriers to effective implementation with existing feedback instruments. This article describes augmentative and alternative communication (AAC)-based techniques for obtaining feedback from this population, and presents results from administration of a modified questionnaire to 12 individuals with SSPI after trials with a BCI spelling system. The proposed techniques facilitated successful questionnaire completion and provision of narrative feedback for all participants. Questionnaire administration required less than five minutes and minimal effort from participants. Results indicated that individual users may have very different reactions to the same system, and that ratings of workload and comfort provide important information not available through objective performance measures. People with SSPI are critical stakeholders in the future development of BCI, and appropriate adaptation of feedback questionnaires and administration techniques allows them to participate in shaping this assistive technology.

Initial constructs for patient-centered outcome measures to evaluate brain-computer interfaces.

PURPOSE: The authors describe preliminary work toward the creation of patient-centered outcome (PCO) measures to evaluate brain-computer interface (BCI) as an assistive technology (AT) for individuals with severe speech and physical impairments (SSPI). METHOD: In Phase 1, 591 items from 15 existing measures were mapped to the International Classification of Functioning, Disability and Health (ICF). In Phase 2, qualitative interviews were conducted with eight people with SSPI and seven caregivers. Resulting text data were coded in an iterative analysis. RESULTS: Most items (79%) were mapped to the ICF environmental domain; over half (53%) were mapped to more than one domain. The ICF framework was well suited for mapping items related to body functions and structures, but less so for items in other areas, including personal factors. Two constructs emerged from qualitative data: quality of life (QOL) and AT. Component domains and themes were identified for each. CONCLUSIONS: Preliminary constructs, domains and themes were generated for future PCO measures relevant to BCI. Existing instruments are sufficient for initial items but do not adequately match the values of people with SSPI and their caregivers. Field methods for interviewing people with SSPI were successful, and support the inclusion of these individuals in PCO research. Implications for Rehabilitation Adapted interview methods allow people with severe speech and physical impairments to participate in patient-centered outcomes research. Patient-centered outcome measures are needed to evaluate the clinical implementation of brain-computer interface as an assistive technology.

Supporting communication for patients with neurodegenerative disease.

BACKGROUND: Communication supports, referred to as augmentative and alternative communication (AAC), are an integral part of medical speech-language pathology practice, yet many providers remain unfamiliar with assessment and intervention principles. For patients with complex communication impairments secondary to neurodegenerative disease, AAC services differ depending on whether their condition primarily affects speech and motor skills (ALS), language (primary progressive aphasia) or cognition (Alzheimer's disease). This review discusses symptom management for these three conditions, identifying behavioral strategies, low- and high-tech solutions for implementation during the natural course of disease. These AAC principles apply to all neurodegenerative diseases in which common symptoms appear. OBJECTIVES: To present AAC interventions for patients with neurodegenerative diseases affecting speech, motor, language and cognitive domains. Three themes emerge: (1) timing of intervention: early referral, regular re-evaluations and continual treatment are essential; (2) communication partners must be included from the onset to establish AAC acceptance and use; and (3) strategies will change over time and use multiple modalities to capitalize on patients' strengths. CONCLUSIONS: AAC should be standard practice for adults with neurodegenerative disease. Patients can maintain effective, functional communication with AAC supports. Individualized communication systems can be implemented ensuring patients remain active participants in daily activities.

Brain-computer interface users speak up: the Virtual Users' Forum at the 2013 International Brain-Computer Interface Meeting.

More than 300 researchers gathered at the 2013 International Brain-Computer Interface (BCI) Meeting to discuss current practice and future goals for BCI research and development. The authors organized the Virtual Users' Forum at the meeting to provide the BCI community with feedback from users. We report on the Virtual Users' Forum, including initial results from ongoing research being conducted by 2 BCI groups. Online surveys and in-person interviews were used to solicit feedback from people with disabilities who are expert and novice BCI users. For the Virtual Users' Forum, their responses were organized into 4 major themes: current (non-BCI) communication methods, experiences with BCI research, challenges of current BCIs, and future BCI developments. Two authors with severe disabilities gave presentations during the Virtual Users' Forum, and their comments are integrated with the other results. While participants' hopes for BCIs of the future remain high, their comments about available systems mirror those made by consumers about conventional assistive technology. They reflect concerns about reliability (eg, typing accuracy/speed), utility (eg, applications and the desire for real-time interactions), ease of use (eg, portability and system setup), and support (eg, technical support and caregiver training). People with disabilities, as target users of BCI systems, can provide valuable feedback and input on the development of BCI as an assistive technology. To this end, participatory action research should be considered as a valuable methodology for future BCI research.

A clinical screening protocol for the RSVP Keyboard brain-computer interface.

PURPOSE: To propose a screening protocol that identifies requisite sensory, motor, cognitive and communication skills for people with locked-in syndrome (PLIS) to use the RSVP Keyboard™ brain-computer interface (BCI). METHOD: A multidisciplinary clinical team of seven individuals representing five disciplines identified requisite skills for the BCI RSVP Keyboard™. They chose questions and subtests from existing standardized instruments for auditory comprehension, reading and spelling, modified them to accommodate nonverbal response modalities, and developed novel tasks to screen visual perception, sustained visual attention and working memory. Questions were included about sensory skills, positioning, pain interference and medications. The result is a compilation of questions, adapted subtests and original tasks designed for this new BCI system. It was administered to 12 PLIS and 6 healthy controls. RESULTS: Administration required 1 h or less. Yes/no choices and eye gaze were adequate response modes for PLIS. Healthy controls and 9 PLIS were 100% accurate on all tasks; 3 PLIS missed single items. CONCLUSIONS: The RSVP BCI screening protocol is a brief, repeatable technique for patients with different levels of LIS to identify the presence/absence of skills for BCI use. Widespread adoption of screening methods should be a clinical goal and will help standardize BCI implementation for research and intervention. Implications for Rehabilitation People with locked-in syndrome must have certain sensory, motor, cognitive and communication skills to successfully use a brain-computer interface (BCI) for communication. A screening profile would be useful in identifying potentially suitable candidates for BCI.

Noninvasive brain-computer interfaces for augmentative and alternative communication.

Brain-computer interfaces (BCIs) promise to provide a novel access channel for assistive technologies, including augmentative and alternative communication (AAC) systems, to people with severe speech and physical impairments (SSPI). Research on the subject has been accelerating significantly in the last decade and the research community took great strides toward making BCI-AAC a practical reality to individuals with SSPI. Nevertheless, the end goal has still not been reached and there is much work to be done to produce real-world-worthy systems that can be comfortably, conveniently, and reliably used by individuals with SSPI with help from their families and care givers who will need to maintain, setup, and debug the systems at home. This paper reviews reports in the BCI field that aim at AAC as the application domain with a consideration on both technical and clinical aspects.

Brain-computer interface with language model-electroencephalography fusion for locked-in syndrome.

BACKGROUND: Some noninvasive brain-computer interface (BCI) systems are currently available for locked-in syndrome (LIS) but none have incorporated a statistical language model during text generation. OBJECTIVE: To begin to address the communication needs of individuals with LIS using a noninvasive BCI that involves rapid serial visual presentation (RSVP) of symbols and a unique classifier with electroencephalography (EEG) and language model fusion. METHODS: The RSVP Keyboard was developed with several unique features. Individual letters are presented at 2.5 per second. Computer classification of letters as targets or nontargets based on EEG is performed using machine learning that incorporates a language model for letter prediction via Bayesian fusion enabling targets to be presented only 1 to 4 times. Nine participants with LIS and 9 healthy controls were enrolled. After screening, subjects first calibrated the system, and then completed a series of balanced word generation mastery tasks that were designed with 5 incremental levels of difficulty, which increased by selecting phrases for which the utility of the language model decreased naturally. RESULTS: Six participants with LIS and 9 controls completed the experiment. All LIS participants successfully mastered spelling at level 1 and one subject achieved level 5. Six of 9 control participants achieved level 5. CONCLUSIONS: Individuals who have incomplete LIS may benefit from an EEG-based BCI system, which relies on EEG classification and a statistical language model. Steps to further improve the system are discussed.