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      Telehealth for amyotrophic lateral sclerosis in a multidisciplinary service in a Brazilian reference center Translated title: Telessaúde para esclerose lateral amiotrófica em um serviço multidisciplinar em um centro de referência brasileiro

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          Abstract

          Background  Telehealth has been used in the treatment of different diseases, and it has been shown to provide benefits for patients with amyotrophic lateral sclerosis (ALS). Due to the social distancing measures put into effect during the coronavirus disease 2019 (COVID-19) pandemic, there was an urgent need for telehealth to ensure the provision of healthcare.

          Objective  To evaluate the feasibility of telehealth for the provision of multidisciplinary ALS care, and to assess its acceptability among patients and caregivers.

          Methods  We conducted a retrospective cohort study in which multidisciplinary evaluations were performed using the Teleconsulta platform. The patients included had ALS and at least one in-person clinical evaluation. The patients and the caregivers answered satisfaction questionnaires.

          Results  The sample was composed of 46 patients, 32 male and 14 female subjects. The average distance from their residences to the reference services was of 115 km. Respiratory adjustment was the most addressed topic.

          Conclusion  The strategy is viable and well accepted in terms of satisfaction. It was even more positive for patients in advanced stages of the disease or for those living far from the referral center.

          Resumo

          Antecedentes  A telessaúde tem sido utilizada no tratamento de diferentes doenças, e demonstrou-se que ela traz benefícios para pacientes com esclerose lateral amiotrófica (ELA). Devido às medidas de distanciamento social postas em prática durante a pandemia de doença do coronavírus 2019 ( coronavirus disease 2019 , COVID-19, em inglês), houve uma necessidade urgente de se usar a telessaúde para garantir a provisão dos cuidados de saúde.

          Objetivo  Avaliar a viabilidade da telessaúde para a prestação de cuidados multidisciplinares na ELA, e verificar a sua aceitabilidade entre os pacientes e os cuidadores.

          Métodos  Realizou-se um estudo de coorte retrospectivo, com avaliações multidisciplinares realizadas por meio da plataforma Teleconsulta. Os pacientes incluídos apresentavam ELA, e já haviam passado por pelo menos uma avaliação clínica presencial. Os pacientes e os cuidadores responderam a questionários de satisfação.

          Resultados  A amostra continha 46 pacientes, 32 do sexo masculino e 14 do sexo feminino. A distância média de suas residências ao serviço de referência era de 115 km. O ajuste respiratório foi o tema mais abordado.

          Conclusão  A estratégia é viável e bem-aceita em termos de satisfação. Foi ainda mais positiva para os pacientes com doença avançada ou residentes em uma cidade distante do centro de referência.

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          Likert scales: how to (ab)use them.

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            What is telemedicine? A collection of 104 peer-reviewed perspectives and theoretical underpinnings.

            Nearly half a century ago, telemedicine was disregarded for being an unwieldy, unreliable, and unaffordable technology. Rapidly evolving telecommunications and information technologies have provided a solid foundation for telemedicine as a feasible, dependable, and useful technology. Practitioners from a variety of medical specialties have claimed success in their telemedicine pursuits. Gradually, this new modality of healthcare delivery is finding its way into the mainstream medicine. As a multidisciplinary, dynamic, and continually evolving tool in medicine, researchers and users have developed various definitions for telemedicine. The meaning of telemedicine encapsulated in these definitions varies with the context in which the term was applied. An analysis of these definitions can play an important role in improving understanding about telemedicine. In this paper we present an extensive literature review that produced 104 peer-reviewed definitions of telemedicine. These definitions have been analyzed to highlight the context in which the term has been defined. The paper also suggests a definition of modern telemedicine. The authors suggest that telemedicine is a branch of e-health that uses communications networks for delivery of healthcare services and medical education from one geographical location to another. It is deployed to overcome issues like uneven distribution and shortage of infrastructural and human resources. We expect that this study will enhance the level of understanding and meaning of telemedicine among stakeholders, new entrants, and researchers, eventually enabling a better quality of life.
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              A proposed staging system for amyotrophic lateral sclerosis

              Amyotrophic lateral sclerosis is a neurodegenerative disorder characterized by progressive loss of upper and lower motor neurons, with a median survival of 2–3 years. Although various phenotypic and research diagnostic classification systems exist and several prognostic models have been generated, there is no staging system. Staging criteria for amyotrophic lateral sclerosis would help to provide a universal and objective measure of disease progression with benefits for patient care, resource allocation, research classifications and clinical trial design. We therefore sought to define easily identified clinical milestones that could be shown to occur at specific points in the disease course, reflect disease progression and impact prognosis and treatment. A tertiary referral centre clinical database was analysed, consisting of 1471 patients with amyotrophic lateral sclerosis seen between 1993 and 2007. Milestones were defined as symptom onset (functional involvement by weakness, wasting, spasticity, dysarthria or dysphagia of one central nervous system region defined as bulbar, upper limb, lower limb or diaphragmatic), diagnosis, functional involvement of a second region, functional involvement of a third region, needing gastrostomy and non-invasive ventilation. Milestone timings were standardized as proportions of time elapsed through the disease course using information from patients who had died by dividing time to a milestone by disease duration. Milestones occurred at predictable proportions of the disease course. Diagnosis occurred at 35% through the disease course, involvement of a second region at 38%, a third region at 61%, need for gastrostomy at 77% and need for non-invasive ventilation at 80%. We therefore propose a simple staging system for amyotrophic lateral sclerosis. Stage 1: symptom onset (involvement of first region); Stage 2A: diagnosis; Stage 2B: involvement of second region; Stage 3: involvement of third region; Stage 4A: need for gastrostomy; and Stage 4B: need for non-invasive ventilation. Validation of this staging system will require further studies in other populations, in population registers and in other clinic databases. The standardized times to milestones may well vary between different studies and populations, although the stages themselves and their meanings are likely to remain unchanged.
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                Author and article information

                Journal
                Arq Neuropsiquiatr
                Arq Neuropsiquiatr
                10.1055/s-00054595
                Arquivos de Neuro-Psiquiatria
                Thieme Revinter Publicações Ltda. (Rua do Matoso 170, Rio de Janeiro, RJ, CEP 20270-135, Brazil )
                0004-282X
                1678-4227
                31 May 2023
                May 2023
                1 May 2023
                : 81
                : 5
                : 469-474
                Affiliations
                [1 ]Universidade Federal do Rio Grande do Norte, Departamento de Medicina Integrada, Natal RN, Brazil.
                [2 ]Universidade Federal do Rio Grande do Norte, Laboratório de Inovação Tecnológica em Saúde, Natal RN, Brazil.
                Author notes
                Address for correspondence Emanuela Coriolano Fidelix efidelix@ 123456gmail.com
                Author information
                http://orcid.org/0000-0002-6485-9493
                http://orcid.org/0000-0002-3527-2618
                http://orcid.org/0000-0001-5037-1545
                http://orcid.org/0000-0002-9462-2294
                Article
                ANP-22-0294
                10.1055/s-0043-1768161
                10232030
                72976088-4142-4960-b500-73fdb8103adc
                Academia Brasileira de Neurologia. This is an open access article published by Thieme under the terms of the Creative Commons Attribution 4.0 International License, permitting copying and reproduction so long as the original work is given appropriate credit ( https://creativecommons.org/licenses/by/4.0/ )

                This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 30 November 2022
                : 15 January 2023
                Categories
                Original Article

                amyotrophic lateral sclerosis,motor neuron disease,telemedicine,esclerose amiotrófica lateral,doença do neurônio motor,telemedicina

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