Eye Tracking Impact on Quality-of-Life of ALS Patients

Chronic neurological disorders in their advanced phase are characterized by a progressive loss of mobility (use of upper and lower limbs), speech and social life. Some of these pathologies, such as amyotrophic lateral sclerosis and multiple sclerosis, are paradigmatic of these deficits. High technology communication instruments, such as eye tracking, can be an extremely important possibility to reintroduce these patients in their family and social life, in particular when they suffer severe disability. This paper reports and describes the results of an ongoing experimentation about Eye Tracking impact on the quality of life of amyotrophic lateral sclerosis patients. The aim of the experimentation is to evaluate if and when eye tracking technologies have a positive impact on patients' live

Studies on the impact of assistive communication devices on the quality of life of patients with amyotrophic lateral sclerosis

Tese de doutoramento, Ciências Biomédicas (Neurociências), Universidade de Lisboa, Faculdade de Medicina, 2016Amyotrophic Lateral Sclerosis (ALS) is a progressive neuromuscular disease with rapid and generalized degeneration of motor neurons. Patients with ALS experiment a relentless decline in functions that affect performance of most activities of daily living (ADL), such as speaking, eating, walking or writing. For this reason, dependence on caregivers grows as the disease progresses. Management of the respiratory system is one of the main concerns of medical support, since respiratory failure is the most common cause of death in ALS. Due to increasing muscle weakness, most patients experience dramatic decrease of speech intelligibility and difficulties in using upper limbs (UL) for writing. There is growing evidence that mild cognitive impairment is common in ALS, but most patients are self-conscious of their difficulties in communicating and, in very severe stages, locked-in syndrome can occur. When no other resources than speech and writing are used to assist communication, patients are deprived of expressing needs or feelings, making decisions and keeping social relationships. Further, caregivers feel increased dependence due to difficulties in communication with others and get frustrated about difficulties in understanding partners’ needs. Support for communication is then very important to improve quality of life of both patients and caregivers; however, this has been poorly investigated in ALS. Assistive communication devices (ACD) can support patients by providing a diversity of tools for communication, as they progressively lose speech. ALS, in common with other degenerative conditions, introduces an additional challenge for the field of ACD: as the disease progresses, technologies must adapt to different conditions of the user. In early stages, patients may need speech synthesis in a mobile device, if dysarthria is one of the initial symptoms, or keyboard modifications, as weakness in UL increases. When upper limbs’ dysfunction is high, different input technologies may be adapted to capture voluntary control (for example, eye-tracking devices). Despite the enormous advances in the field of Assistive Technologies, in the last decade, difficulties in clinical support for the use of assistive communication devices (ACD) persist. Among the main reasons for these difficulties are lack of assessment tools to evaluate communication needs and determine proper input devices and to indicate changes over disease progression, and absence of clinical evidence that ACD has relevant impact on the quality of life of affected patients. For this set of reasons, support with communication tools is delayed to stages where patients are severely disabled. Often in these stages, patients face additional clinical complications and increased dependence on their caregivers’ decisions, which increase the difficulty in adaptation to new communication tools. This thesis addresses the role of assistive technologies in the quality of life of early-affected patients with ALS. Also, it includes the study of assessment tools that can improve longitudinal evaluation of communication needs of patients with ALS. We longitudinally evaluated a group of 30 patients with bulbar-onset ALS and 17 caregivers, during 2 to 29 months. Patients were assessed during their regular clinical appointments, in the Hospital de Santa Maria-Centro Hospitalar Lisboa_Norte. Evaluation of patients was based on validated instruments for assessing the Quality of Life (QoL) of patients and caregivers, and on methodologies for recording communication and measuring its performance (including speech, handwriting and typing). We tested the impact of early support with ACD on the QoL of patients with ALS, using a randomized, prospective, longitudinal design. Patients were able to learn and improve their skills to use communication tools based on electronic assistive devices. We found a positive impact of ACD in psychological and wellbeing domains of quality of life in patients, as well as in the support and psychological domains in caregivers. We also studied performance of communication (words per minute) using UL. Performance in handwriting may decline faster than performance in typing, supporting the idea that the use of touchscreen-based ACD supports communication for longer than handwriting. From longitudinal recordings of speech and typing activity we could observe that ACD can support tools to detect early markers of bulbar and UL dysfunction in ALS. Methodologies that were used in this research for recording and assessing function in communication can be replicated in the home environment and form part of the original contributions of this research. Implementation of remote monitoring tools in daily use of ACD, based on these methodologies, is discussed. Considering those patients who receive late support for the use of ACD, lack of time or daily support to learn how to control complex input devices may hinder its use. We developed a novel device to explore the detection and control of various residual movements, based on sensors of accelerometry, electromyography and force, as input signals for communication. The aim of this input device was to develop a tool to explore new communication channels in patients with generalized muscle weakness. This research contributed with novel tools from the Engineering field to the study of assistive communication in patients with ALS. Methodologies that were developed in this work can be further applied to the study of the impact of ACD in other neurodegenerative diseases that affect speech and motor control of UL

Speech-Language Pathologists’ Perceptions Regarding Augmentative and Alternative Communication Implementation and Assessment in the Adult Population

The goal of this research project is to bring awareness to a part of the population that is severely lacking in both representation and research in regard to the use of augmentative and alternative communication (AAC), bringing attention to the scarcity of studies centered around AAC use in adults. This study hopes to increase the number of SLPs who are comfortable in assessing and implemeneting AAC systems with adults. The survey included questions pertaining to how long SLPs had been practicing, what populations they are most familiar with, their comfort levels regarding both AAC implementation and assessment, and memorable experiences they may have had regarding AAC. The survey was sent via email to 589 licensed SLPs practicing in settings with primarily adult populations in the state of Mississippi. A total of 72 surveys were submitted, and 61 complete responses were obtained. Preliminary results indicated that although many SLPs have implemented a multitude of systems in their career, they do not necessarily feel confident when implementing AAC systems; data also indicated that an overwhelming majority of SLPs find AAC to be helpful when implemented correctly. This project and its outcomes contribute to SLPs’ awareness of AAC implementation and assessment in adults, along with bringing attention to the insufficient number of studies centered around AAC use in adults. Keywords: speech-language pathology, AAC, augmentative and alternative communication, adults, S

A wireless user- computer interface to explore various sources of biosignals and visual biofeedback for severe motor impairment

Severe speech and motor impairments caused by several neurological disorders can limit communication skills to simple yes/no replies. Variability among patients’ physical and social conditions justifies the need of providing multiple sources of signals to access to Augmentative and Alternative Communication (AAC) systems. Our study presents the development of a new user-computer interface that can be controlled by the detection of various sources of biosignals. Wireless sensors are placed on the body and users learn to enhance the control of detected signals by visual biofeedback, on a switch based control approach. Experimental results in four patients with just few residual movements showed that different sensors can be placed in different body locations and detect novel communication channels, according to each person’s physiological and social condition. Especially in progressive conditions, this system can be used by therapists to anticipate progression and assess new channels for communication.Peer Reviewe

The perspectives of augmentative and alternative communication experts on the clinical integration of non-invasive brain-computer interfaces

As brain-computer interface for augmentative and alternative communication access (BCI-AAC) development continues to consider avenues for translation into the clinical setting, the perspectives of clinician experts in AAC should be considered. Therefore, 11 USA-based speech-language pathologists who are experts in AAC completed a semistructured interview along with Likert scale measures to assess their perspectives on BCI-AAC. The interviews and scales explored the potential impact of BCI-AAC, along with barriers and solutions to BCI-AAC implementation. Speech-language pathologists estimated that 1.5% to 50% of their caseload may benefit from BCI-AAC across various settings. Further, identified barriers and solutions included (a) BCI-AAC implementation and support, (b) funding and access, (c) applicability and literacy skills, (d) assessment and training in supporting outcomes, and (e) motivation and customization. Results reinforce and extend existing directions for BCI-AAC translation such as user-centered assessment, stakeholder support, and populations who may benefit from intervention, such as children

Augmentative and Alternative Communication and digital participation

Communication is a basic need for all people to fully participate in life. Persons with disabilities may face particular challenges in developing their communication skills and using them appropriately in different situations. Augmentative and Alternative Communication (AAC) tools and methods can assist individuals in this process. Increasing digitization has changed the way everyone communicates, and this offers opportunities for persons using AAC. This paper briefly outlines what has been achieved in terms of digitalization in AAC. The need for full, adapted access to technology is highlighted and research desiderata are identified.Peer Reviewe

A screening protocol incorporating brain-computer interface feature matching considerations for augmentative and alternative communication

Purpose: The use of standardized screening protocols may inform brain-computer interface (BCI) research procedures to help maximize BCI performance outcomes and provide foundational information for clinical translation. Therefore, in this study we developed and evaluated a new BCI screening protocol incorporating cognitive, sensory, motor and motor imagery tasks. Methods: Following development, BCI screener outcomes were compared to the Amyotrophic Lateral Sclerosis Cognitive Behavioral Screen (ALS-CBS), and ALS Functional Rating Scale (ALS-FRS) for twelve individuals with a neuromotor disorder. Results: Scores on the cognitive portion of the BCI screener demonstrated limited variability, indicating all participants possessed core BCI-related skills. When compared to the ALS-CBS, the BCI screener was able to modestly discriminate possible cognitive difficulties that are likely to influence BCI performance. In addition, correlations between the motor imagery section of the screener and ALS-CBS and ALS-FRS were non-significant, suggesting the BCI screener may provide information not captured on other assessment tools. Additional differences were found between motor imagery tasks, with greater self-ratings on first-person explicit imagery of familiar tasks compared to unfamiliar/ generic BCI tasks. Conclusion: The BCI screener captures factors likely relevant for BCI, which has value for guiding person-centered BCI assessment across different devices to help inform BCI trials. Includes supplemental data

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

Augmentative and Alternative Communication in the Intensive Care Unit

Current research is lacking on the frequency of augmentative and alternative communication (AAC) system use in intensive care units (ICU) and clinical decision making patterns. AAC is use of any alternative method of communication when oral communication cannot be achieved (ASHA, 2013). Patients in the ICU may become nonverbal for many reasons including tracheostomy, mechanical ventilation (McKinley, Pooke, & White, 2010) and intubation (Radtke, Bauman, Garrett, & Happ, 2011). Being nonverbal in the ICU may lead to poorer health outcomes (Patak, Wilson-Stronks, & Costello, 2009). AAC systems may improve outcomes by allowing patients to communicate more clearly with family, friends, and hospital staff. ICU patients communicate with nurses more than any other healthcare professional (Happ, Tuite, Dobbin, DiVirgilio-Thomas, & Kitutu, 2004). AAC systems are crucial for patient-nurse communication. Speech-language pathologists (SLPs) evaluate for and provide AAC systems to individuals across the lifespan and setting, including those in ICU. Forty SLPs who worked in a hospital with an ICU and 8 RNs who worked in the ICU responded to an electronic survey. Half of the SLPs indicated some form of AAC was being used in the ICU. The majority of RNs (n=5) responded that AAC was seldom used in the ICU. Lack of equipment/resources, time constrains, and feasibility were among the most selected reasons why AAC was not being provided per SLPs. Overall, results from the research suggested that AAC is not standard practice within the ICU