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

Systematic review

Publisher Copyright: © Salome Azevedo, Teresa Cipriano Rodrigues, Ana Rita Londral. Originally published in JMIR mHealth and uHealth (https://mhealth.jmir.org), 19.08.2021. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR mHealth and uHealth, is properly cited. The complete bibliographic information, a link to the original publication on https://mhealth.jmir.org/, as well as this copyright and license information must be included.Background: The COVID-19 pandemic catalyzed the adoption of home telemonitoring to cope with social distancing challenges. Recent research on home telemonitoring demonstrated benefits concerning the capacity, patient empowerment, and treatment commitment of health care systems. Moreover, for some diseases, it revealed significant improvement in clinical outcomes. Nevertheless, when policy makers and practitioners decide whether to scale-up a technology-based health intervention from a research study to mainstream care delivery, it is essential to assess other relevant domains, such as its feasibility to be expanded under real-world conditions. Therefore, scalability assessment is critical, and it encompasses multiple domains to ensure population-wide access to the benefits of the growing technological potential for home telemonitoring services in health care. Objective: This systematic review aims to identify the domains and methods used in peer-reviewed research studies that assess the scalability of home telemonitoring-based interventions under real-world conditions. Methods: The authors followed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) guidelines and used multiple databases (PubMed, Scopus, Web of Science, and EconLit). An integrative synthesis of the eligible studies was conducted to better explore each intervention and summarize relevant information concerning the target audience, intervention duration and setting, and type of technology. Each study design was classified based on the strength of its evidence. Lastly, the authors conducted narrative and thematic analyses to identify the domains, and qualitative and quantitative methods used to support scalability assessment. Results: This review evaluated 13 articles focusing on the potential of scaling up a home telemonitoring intervention. Most of the studies considered the following domains relevant for scalability assessment: problem (13), intervention (12), effectiveness (13), and costs and benefits (10). Although cost-effectiveness was the most common evaluation method, the authors identified seven additional cost analysis methods to evaluate the costs. Other domains were less considered, such as the sociopolitical context (2), workforce (4), and technological infrastructure (3). Researchers used different methodological approaches to assess the effectiveness, costs and benefits, fidelity, and acceptability. Conclusions: This systematic review suggests that when assessing scalability, researchers select the domains specifically related to the intervention while ignoring others related to the contextual, technological, and environmental factors, which are also relevant. Additionally, studies report using different methods to evaluate the same domain, which makes comparison difficult. Future work should address research on the minimum required domains to assess the scalability of remote telemonitoring services and suggest methods that allow comparison among studies to provide better support to decision makers during large-scale implementation.publishersversionpublishe

a before-after design analysis

Funding FVH, FM, and ARL acknowledge funding from the Portuguese National Funding Agency for Science, Research, and Technology (FCT) and public ESF funding with reference LISBOA-05–3559-FSE-000003. SG acknowledges funding from DSAIPA project FrailCare.AI (DSAIPA/0106/2019/02) with the fnancial support of FCT.BACKGROUND: Emergency department (ED) High users (HU), defined as having more than ten visits to the ED per year, are a small group of patients that use a significant proportion of ED resources. The High Users Resolution Group (GRHU) identifies and provides care to HU to improve their health conditions and reduce the frequency of ED visits by delivering patient-centered case management integrated care. The main objective of this study was to measure the impact of the GRHU intervention in reducing ED visits, outpatient appointments, and hospitalizations. As secondary objectives, we aimed to compare the GRHU intervention costs against its potential savings or additional costs. Finally, we intend to study the impact of this intervention across different groups of patients. METHODS: We studied the changes triggered by the GRHU program in a retrospective, non-controlled before-after analysis of patients' hospital utilization data on 6 and 12-month windows from the first appointment. RESULTS: A total of 238 ED HU were intervened. A sample of 152 and 88 patients was analyzed during the 6 and 12-month window, respectively. On the 12-month window, GRHU intervention was associated with a statistically significant reduction of 51% in ED visits and hospitalizations and a non-statistically significant increase in the total number of outpatient appointments. Overall costs were reduced by 43.56%. We estimated the intervention costs to be €79,935.34. The net cost saving was €104,305.25. The program's Return on Investment (ROI) was estimated to be €2.3. CONCLUSION: Patient-centered case management for ED HU seems to effectively reduce ED visits and hospitalizations, leading to better use of resources.publishersversionpublishe

Scale-up of Digital Innovations in Health Care: Expert Commentary on Enablers and Barriers

Health care delivery is undergoing a rapid change from traditional processes toward the use of digital health interventions and personalized medicine. This movement has been accelerated by the COVID-19 crisis as a response to the need to guarantee access to health care services while reducing the risk of contagion. Digital health scale-up is now also vital to achieve population-wide impact: it will only accomplish sustainable effects if and when deployed into regular health care delivery services. The question of how sustainable digital health scale-up can be successfully achieved has, however, not yet been sufficiently resolved. This paper identifies and discusses enablers and barriers for scaling up digital health innovations. The results discussed in this paper were gathered by scientists and representatives of public bodies as well as patient organizations at an international workshop on scaling up digital health innovations. Results are explored in the context of prior research and implications for future work in achieving large-scale implementations that will benefit the population as a whole

Expert Commentary on Enablers and Barriers

©Hannes Schlieter, Lisa A Marsch, Diane Whitehouse, Lena Otto, Ana Rita Londral, Gisbert Wilhelm Teepe, Martin Benedict, Joseph Ollier, Tom Ulmer, Nathalie Gasser, Sabine Ultsch, Bastian Wollschlaeger, Tobias Kowatsch. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 11.03.2022.Health care delivery is undergoing a rapid change from traditional processes toward the use of digital health interventions and personalized medicine. This movement has been accelerated by the COVID-19 crisis as a response to the need to guarantee access to health care services while reducing the risk of contagion. Digital health scale-up is now also vital to achieve population-wide impact: it will only accomplish sustainable effects if and when deployed into regular health care delivery services. The question of how sustainable digital health scale-up can be successfully achieved has, however, not yet been sufficiently resolved. This paper identifies and discusses enablers and barriers for scaling up digital health innovations. The results discussed in this paper were gathered by scientists and representatives of public bodies as well as patient organizations at an international workshop on scaling up digital health innovations. Results are explored in the context of prior research and implications for future work in achieving large-scale implementations that will benefit the population as a whole.publishersversionpublishe

Augmenting communication, emotion expression and interaction capabilities of individuals with cerebral palsy

!c 2014Verlag der Technischen Universit¨at Graz. Providing individuals with cerebral palsy (CP) tools to communicate and interact with the environment independently and reliably since childhood would allow for a more active participation in education and social life. We outline first steps towards the development of such a hybrid brain-computer interface-based (BCI) communication tool.This work was supported by the FP7 Framework EU Research Project ABC (No. 287774). This paper only reflects the authors views and funding agencies are not liable for any use that may be made of the information contained herein.Peer Reviewe

Keeping Citizens Informed About Value in Health Care

UIDB/03213/2020 UIDP/03213/2020In the context of the creation of the first Portuguese Atlas of Health Variation (PAHV), we associate a linguistic resource to the Atlas in the form of a terminological glossary. In this article, we will present the interdisciplinary contours of this project, in which the fields of Terminology, Literacy, and Health Economics meet to design a collaborative product with two components. One is geared toward experts in the field of Value-Based Health Care. The other is an approach that considers the low literacy level of citizens who are not experts in this field and therefore leads to thinking about adapting terminology content for popularization and dissemination through social networks.publishersversionpublishe

Effectiveness of the Knee Care @Home Programme compared for patients following anterior cruciate ligament reconstruction: a trial protocol

Background: After anterior cruciate ligament reconstruction, patients who are unable to remain completely compliant with conventional outpatient rehabilitation may benefit from remote sessions consisting of therapeutic exercises delivered via the internet. These sessions may increase accessibility in traditionally isolated and underserved regions, extend the duration of care, enhance surveillance and supervision, and promote greater collaboration among health professionals. Objectives: To evaluate the effectiveness of the Knee Care @Home programme in conjunction with conventional outpatient rehabilitation on patient-reported, clinician- reported, and physical functional performance outcome measures after anterior cruciate ligament reconstruction. The trial also aims to determine the clinical relevance of changes in outcome measures. Methods: This is a protocol for a randomised controlled trial. Adults of both sexes will be evaluated. All participants who postoperatively meet the appropriate criteria will be allocated either to the conventional outpatient rehabilitation group or the knee care @home group. Only the latter will receive synchronous internet- based supervision of exercises at home in addition to conventional outpatient rehabilitation. A follow-up evaluation is conducted for both groups 12 weeks after the end of the intervention. Expected Results: Demonstrate the effectiveness of the knee care @home programme in conjunction with conventional outpatient rehabilitation on patient- reported, clinician-reported, and physical functional performance outcome measures after anterior cruciate ligament reconstruction, thus offering health and exercise professionals a new methodology for rehabilitation practise

Incidence, Risk Factors, and Management of Postoperative Pain in Patients Recovering from Knee Surgery: Protocol for a Prospective Cohort Study

Background: Many individuals who undergo knee surgery recover without complications; however, some may experience postoperative pain and be unable to resume their normal daily activities. Prospective observational studies on knee postoperative pain can be useful for identifying patients at risk, recognising predictive factors, and determining the most effective management strategies. Objectives: The main purpose of this study is to determine the incidence and risk factors of postoperative pain in patients recovering from knee surgery. In addition, we intend to examine offered pain management strategies and the effect of rehabilitation exposure on the incidence of postoperative pain. Methods: This is a study protocol for a single-centre, prospective cohort study. During their first postoperative consultation, adults of both sexes that are scheduled to undergo knee surgery and meet the eligibility criteria will be enrolled. Throughout the first 15 days immediately after surgery, all participants will be invited to report daily on their pain intensity, and pain management strategies. Starting at the first postoperative consultation, irrespective of adopted recovery protocols, each participant will have six moments of evaluation that correspond to scheduled consultations with the orthopaedic surgeon. An additional evaluation is conducted 36 weeks after discharge from the hospital. Expected Results: The expected outcome of this study is an understanding of how pain evolves after knee surgery and which factors may predict the persistence of this symptom throughout the recovery period. In addition, we anticipate gaining insight into the impacts of pain management strategies and exposure to rehabilitation on postoperative pain

Implementation of the Knee Care @Home Programme for Patients Recovering from Anterior Cruciate Ligament Reconstruction: Protocol for a Randomised Feasibility Trial

Background: Supervised remote sessions consisting of therapeutic exercises delivered via the internet can be an excellent supplement for patients who are unable to respect conventional outpatient rehabilitation after anterior cruciate ligament reconstruction by increasing exposure and extending the duration of recovery practises. It can also assist in improving accessibility and collaboration between health professionals, as well as reducing the burden of face-to-face rehabilitation services. Objectives: Determine the feasibility of conducting a trial to evaluate the effectiveness of the Knee Care @Home programme for patients recovering from anterior cruciate ligament reconstruction, including the acceptability of the intervention and to assign a qualitative evaluation within the trial to identify challenges with the implementation and delivery of the programme. Methods: This is a protocol for a randomised feasibility trial concurrent to controlled superiority trial. Adult participants following anterior cruciate ligament reconstruction will be allocated to either the conventional outpatient rehabilitation group or the Knee Care @Home group. Only the latter will receive synchronous internet- based supervision of exercises at home in addition to conventional outpatient rehabilitation. Expected Results: Demonstrate the acceptability and feasibility of delivering the Knee Care @Home Programme in conjunction with conventional outpatient rehabilitation, thus offering health professionals a new rehabilitation methodology while proposing patients a mean to increase exposure and extend the duration of recovery practises, improve accessibility and supervision