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Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Volume 21, 2020 - Issue 3-4
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Clinical

Telehealth as part of specialized ALS care: feasibility and user experiences with “ALS home-monitoring and coaching”

Jochem HellemanDepartment of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Centre, University Medical Centre, Utrecht, the Netherlands, ;Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Centre, University Medical Centre Utrecht, and De Hoogstraat Rehabilitation, Utrecht, the Netherlands, and View further author information
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Remko Van EenennaamDepartment of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Centre, University Medical Centre, Utrecht, the Netherlands, ;Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Centre, University Medical Centre Utrecht, and De Hoogstraat Rehabilitation, Utrecht, the Netherlands, and View further author information
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Esther T. KruitwagenDepartment of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Centre, University Medical Centre, Utrecht, the Netherlands, ;Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Centre, University Medical Centre Utrecht, and De Hoogstraat Rehabilitation, Utrecht, the Netherlands, and View further author information
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Willeke J. KruithofDepartment of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Centre, University Medical Centre, Utrecht, the Netherlands, View further author information
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Marja J. SlappendelDepartment of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Centre, University Medical Centre, Utrecht, the Netherlands, View further author information
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Leonard H. Van Den BergDepartment of Neurology, UMC Utrecht Brain Centre, University Medical Centre, Utrecht, the NetherlandsView further author information
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Johanna M.A. Visser-MeilyDepartment of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Centre, University Medical Centre, Utrecht, the Netherlands, ;Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Centre, University Medical Centre Utrecht, and De Hoogstraat Rehabilitation, Utrecht, the Netherlands, and View further author information
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Anita BeelenDepartment of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Centre, University Medical Centre, Utrecht, the Netherlands, ;Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Centre, University Medical Centre Utrecht, and De Hoogstraat Rehabilitation, Utrecht, the Netherlands, and Correspondence[email protected]
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Pages 183-192 | Received 05 Sep 2019, Accepted 12 Jan 2020, Published online: 31 Jan 2020

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Jordi W. J. Van Unnik, Jaap N.E. Bakers, Steure Kokx, Leonard H. Van Den Berg, Johanna M.A. Visser-Meily, Anita Beelen & Ruben P.A. Van Eijk. (2023) Portable fixed dynamometry enables home-based, reliable assessment of muscle strength in patients with amyotrophic lateral sclerosis: a pilot study. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 24:7-8, pages 651-660.
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Liam Knox, Christopher McDermott & Esther Hobson. (2022) Telehealth in long-term neurological conditions: the potential, the challenges and the key recommendations. Journal of Medical Engineering & Technology 46:6, pages 506-517.
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Articles from other publishers (22)

Katja C. Senn, Simone Thiele, Karsten Kummer, Maggie C. Walter & Klaus H. Nagels. (2023) Cost of illness in inclusion body myositis: results from a cross-sectional study in Germany. Orphanet Journal of Rare Diseases 18:1.
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Cory J. Holdom, Jordi W. J. van Unnik, Ruben P. A. van Eijk, Leonard H. van den Berg, Robert D. Henderson, Shyuan T. Ngo & Frederik J. Steyn. (2023) Use of hip- versus wrist-based actigraphy for assessing functional decline and disease progression in patients with motor neuron disease. Journal of Neurology 270:5, pages 2597-2605.
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Elias David Lundereng, Andréa Aparecida Gonçalves Nes, Heidi Holmen, Anette Winger, Hilde Thygesen, Nina Jøranson, Christine Råheim Borge, Olav Dajani, Kari L Mariussen & Simen A Steindal. (2023) Health Care Professionals’ Experiences and Perspectives on Using Telehealth for Home-based Palliative Care: Scoping Review. Journal of Medical Internet Research 25, pages e43429.
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M. L. Dontje, E. Kruitwagen-van Reenen, E. van Wijk, E. Baars, J. M. A. Visser-Meily, A. Beelen, Jim van Os, Leonard van den Berg, Conny van der Meijden, Vincent Cornelissen, Marietta Eimers, Anja Horemans, Esther Kruitwagen, Janneke Sterk, Laura Peeters, Evelien Pirard, Trees Spendel, Anne-Wil Koopman, Remco Timmermans, Germaine Kramer, Evert Schouten & Rineke Jaspers Focks. (2022) Evaluation of the nation-wide implementation of ALS home monitoring & coaching: an e-health innovation for personalized care for patients with motor neuron disease. BMC Health Services Research 22:1.
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Jochem Helleman, Barbara Johnson, Cory Holdom, Esther Hobson, Deirdre Murray, Frederik J. Steyn, Shyuan T. Ngo, Anjali Henders, Madhura B. Lokeshappa, Johanna M. A. Visser-Meily, Leonard H. van den Berg, Orla Hardiman, Anita Beelen, Chris McDermott & Ruben P. A. van Eijk. (2022) Patient perspectives on digital healthcare technology in care and clinical trials for motor neuron disease: an international survey. Journal of Neurology 269:11, pages 6003-6013.
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Simen A Steindal, Andréa Aparecida Gonçalves Nes, Tove E Godskesen, Heidi Holmen, Anette Winger, Jane Österlind, Alfhild Dihle & Anna Klarare. (2022) Advantages and Challenges of Using Telehealth for Home-Based Palliative Care: A Systematic Mixed Studies Review (Preprint). Journal of Medical Internet Research.
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Ntibaneng Hunadi Maleka & Walter Matli. (2022) A review of telehealth during the COVID-19 emergency situation in the public health sector: challenges and opportunities. Journal of Science and Technology Policy Management.
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Sophy Chan-Nguyen, Mustafa Karacam, Benjamin Ritsma & Ramana Appireddy. (2021) Patient Perceptions on the Virtual Amyotrophic Lateral Sclerosis Clinic during COVID-19. Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques 49:4, pages 618-622.
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Jochem Helleman, Jaap N. E. Bakers, Evelien Pirard, Leonard H. van den Berg, Johanna M. A. Visser-Meily & Anita Beelen. (2022) Home-monitoring of vital capacity in people with a motor neuron disease. Journal of Neurology 269:7, pages 3713-3722.
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Raffaele Pugliese, Riccardo Sala, Stefano Regondi, Benedetta Beltrami & Christian Lunetta. (2022) Emerging technologies for management of patients with amyotrophic lateral sclerosis: from telehealth to assistive robotics and neural interfaces. Journal of Neurology 269:6, pages 2910-2921.
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Christine Jacob, Emre Sezgin, Antonio Sanchez-Vazquez & Chris Ivory. (2022) Sociotechnical Factors Affecting Patients’ Adoption of Mobile Health Tools: Systematic Literature Review and Narrative Synthesis. JMIR mHealth and uHealth 10:5, pages e36284.
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Ana Londral. (2022) Assistive Technologies for Communication Empower Patients With ALS to Generate and Self-Report Health Data. Frontiers in Neurology 13.
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Colleen O'Connell & Suzanne Salsman. 2022. Telerehabilitation. Telerehabilitation 135 148 .
M. L. Dontje, E. Kruitwagen - van Reenen, J. M. A. Visser-Meily & A. Beelen. (2021) Implementation and evaluation of an e-health innovation for personalized care for patients with amyotrophic lateral sclerosis (ALS): protocol for a participatory action research study. Implementation Science Communications 2:1.
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Ruben P A van Eijk, Anita Beelen, Esther T Kruitwagen, Deirdre Murray, Ratko Radakovic, Esther Hobson, Liam Knox, Jochem Helleman, Tom Burke, Miguel Ángel Rubio Pérez, Evy Reviers, Angela Genge, Frederik J Steyn, Shyuan Ngo, John Eaglesham, Kit C B Roes, Leonard H van den Berg, Orla Hardiman & Christopher J McDermott. (2021) A Road Map for Remote Digital Health Technology for Motor Neuron Disease. Journal of Medical Internet Research 23:9, pages e28766.
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Shelagh K. Genuis, Westerly Luth, Sandra Campbell, Tania Bubela & Wendy S. Johnston. (2021) Communication About End of Life for Patients Living With Amyotrophic Lateral Sclerosis: A Scoping Review of the Empirical Evidence. Frontiers in Neurology 12.
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Ileana M. Howard & Kathleen Burgess. (2021) Telehealth for Amyotrophic Lateral Sclerosis and Multiple Sclerosis. Physical Medicine and Rehabilitation Clinics of North America 32:2, pages 239-251.
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Fabiola De Marchi, Elena Contaldi, Luca Magistrelli, Roberto Cantello, Cristoforo Comi & Letizia Mazzini. (2021) Telehealth in Neurodegenerative Diseases: Opportunities and Challenges for Patients and Physicians. Brain Sciences 11:2, pages 237.
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Matthew J Miller, Sang S Pak, Daniel R Keller & Deborah E Barnes. (2021) Evaluation of Pragmatic Telehealth Physical Therapy Implementation During the COVID-19 Pandemic. Physical Therapy 101:1.
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Sonu Bhaskar, Sian Bradley, Vijay Kumar Chattu, Anil Adisesh, Alma Nurtazina, Saltanat Kyrykbayeva, Sateesh Sakhamuri, Sebastian Moguilner, Shawna Pandya, Starr Schroeder, Maciej Banach & Daniel Ray. (2020) Telemedicine as the New Outpatient Clinic Gone Digital: Position Paper From the Pandemic Health System REsilience PROGRAM (REPROGRAM) International Consortium (Part 2). Frontiers in Public Health 8.
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James Grogan & Zachary Simmons. (2020) Telemedicine for the Care of Neuromuscular Disorders. Current Treatment Options in Neurology 22:6.
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Fabiola De Marchi, Roberto Cantello, Serena Ambrosini & Letizia Mazzini. (2020) Telemedicine and technological devices for amyotrophic lateral sclerosis in the era of COVID-19. Neurological Sciences 41:6, pages 1365-1367.
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