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Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Volume 19, 2018 - Issue 5-6
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Clinical

Provision of assistive technology devices among people with ALS in Germany: a platform-case management approach

Andreas FunkeOutpatient Center for ALS and other Motor Neuron Disorders, Charité – Universitätsmedizin Berlin, Berlin, Germany, View further author information
,
Susanne SpittelOutpatient Center for ALS and other Motor Neuron Disorders, Charité – Universitätsmedizin Berlin, Berlin, Germany, View further author information
,
Torsten GrehlDepartment of Neurology, Outpatient Center for ALS and other Motor Neuron Disorders, Alfried Krupp Krankenhaus, Essen, Germany, View further author information
,
Julian GrosskreutzHans Berger Department of Neurology, University Hospital Jena, Jena, Germany, View further author information
,
Dagmar KettemannOutpatient Center for ALS and other Motor Neuron Disorders, Charité – Universitätsmedizin Berlin, Berlin, Germany, View further author information
,
Susanne PetriDepartment of Neurology, Medizinische Hochschule Hannover, Hannover, Germany, View further author information
,
Ute WeyenDepartment of Neurology, Outpatient Center for ALS and other Motor Neuron Disorders, Berufsgenossenschaftliches Universitätsklinikum Bergmannsheil, Bochum, Germany, View further author information
,
Patrick WeydtDepartment of Neurodegenerative Diseases and Gerontopsychiatry, University of Bonn, Bonn, Germany, View further author information
,
Johannes DorstDepartment of Neurology, University of Ulm, Ulm, Germany, View further author information
,
Albert C. LudolphDepartment of Neurology, University of Ulm, Ulm, Germany, View further author information
,
Petra BaumDepartment of Neurology, Universitätsklinikum Leipzig, Leipzig, Germany, View further author information
,
Moritz OberstadtDepartment of Neurology, Universitätsklinikum Leipzig, Leipzig, Germany, View further author information
,
Berit JordanDepartment of Neurology, Martin-Luther-University Halle-Wittenberg, Halle (Saale), Germany, View further author information
,
Andreas HermannDepartment of Neurology, Technische Universität Dresden, Dresden, Germany, ;Research Site Dresden, German Center for Neurodegenerative Diseases (DZNE), Dresden, Germany, View further author information
,
Joachim WolfDepartment of Neurology, Diakonissenkrankenhaus Mannheim, Mannheim, Germany, View further author information
,
Matthias BoentertDepartment for Sleep Medicine and Neuromuscular Disorders, Universitätsklinikum Münster, Münster, Germany, and View further author information
,
Bertram WalterAmbulanzpartner Soziotechnologie APST GmbH, Berlin, GermanyView further author information
,
Nadine GajewskiAmbulanzpartner Soziotechnologie APST GmbH, Berlin, GermanyView further author information
,
André MaierOutpatient Center for ALS and other Motor Neuron Disorders, Charité – Universitätsmedizin Berlin, Berlin, Germany, View further author information
,
Christoph MünchOutpatient Center for ALS and other Motor Neuron Disorders, Charité – Universitätsmedizin Berlin, Berlin, Germany, ;Ambulanzpartner Soziotechnologie APST GmbH, Berlin, GermanyView further author information
&
Thomas MeyerOutpatient Center for ALS and other Motor Neuron Disorders, Charité – Universitätsmedizin Berlin, Berlin, Germany, ;Ambulanzpartner Soziotechnologie APST GmbH, Berlin, GermanyCorrespondence[email protected]
View further author information
 show all
Pages 342-350 | Received 03 Sep 2017, Accepted 09 Jan 2018, Published online: 30 Jan 2018

References

  • Gruis KL, Wren PA, Huggins JE. Amyotrophic lateral sclerosis patients' self-reported satisfaction with assistive technology. Muscle Nerve. 2011;43:643–7.
  • Davies A, de Souza LH, Frank AO. Changes in the quality of life in severely disabled people following provision of powered indoor/outdoor chairs. Disabil Rehabil. 2003;25:286–90.
  • Caligari M, Godi M, Guglielmetti S, Franchignoni F, Nardone A. Eye tracking communication devices in amyotrophic lateral sclerosis: impact on disability and quality of life. Amyotroph Lateral Scler Frontotemporal Degener. 2013;14:546–52.
  • Londral A, Pinto A, Pinto S, Azevedo L, De Carvalho M. Quality of life in amyotrophic lateral sclerosis patients and caregivers: impact of assistive communication from early stages. Muscle Nerve. 2015;52:933–41.
  • Linse K, Rüger W, Joos M, Schmitz-Peiffer H, Storch A, Hermann A. Eye-tracking-based assessment suggests preserved well-being in locked-in patients. Ann Neurol. 2017;81:310–15.
  • Creemers H, Beelen A, Grupstra H, Nollet F, van den Berg LH. The provision of assistive devices and home adaptations to patients with ALS in the Netherlands: patients' perspectives. Amyotroph Lateral Scler Frontotemporal Degener. 2014;15:420–5.
  • Henschke C. Provision and financing of assistive technology devices in Germany: a bureaucratic odyssey? The case of amyotrophic lateral sclerosis and Duchenne muscular dystrophy. Health Policy. 2012;105:176–84.
  • van Teijlingen ER, Friend E, Kamal AD. Service use and needs of people with motor neuron disease and their carers in Scotland. Health Soc Care Community. 2001;9:397–403.
  • Hill ME, Phillips MF. Service provision for adults with long-term disability: a review of services for adults with chronic neuromuscular conditions in the United Kingdom. Neuromuscul Disord. 2006;16:107–12.
  • Funke A, Grehl T, Grosskreutz J, Münch C, Walter B, Kettemann D, . Provision of assistive devices in amyotrophic lateral sclerosis. Analysis of 3 years case management in an internet-based supply network. Nervenarzt. 2015;86:1007–17.
  • von Elm E, Altman DG, Egger M, Pocock SJ, Gøtzsche PC, Vandenbroucke JP. STROBE Initiative. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies. Lancet. 2007;370:1453–7.
  • Rosenbohm A, Peter RS, Erhardt S, Lulé D, Rothenbacher D, Ludolph AC, . Epidemiology of amyotrophic lateral sclerosis in Southern Germany. J Neurol. 2017;264:749–57.
  • Brownlee A, Palovcak M. The role of augmentative communication devices in the medical management of ALS. NeuroRehabilitation. 2007;22:445–50.
  • Mackenzie L, Bhuta P, Rusten K, Devine J, Love A, Waterson P. Communications technology and motor neuron disease: an Australian survey of people with motor neuron disease. JMIR Rehabil Assist Technol. 2016;3:e2.
  • Jedeloo S, de Witte LP, Linssen BA, Schrijvers AJ. Client satisfaction with service delivery of assistive technology for outdoor mobility. Disabil Rehabil. 2002;24:550–7.
  • Miller RG, Rosenberg JA, Gelinas DF, Mitsumoto H, Newman D, Sufit R, . Practice parameter: the care of the patient with amyotrophic lateral sclerosis (an evidence-based review): report of the quality standards subcommittee of the American Academy of Neurology: ALS practice parameters task force. Neurology. 1999;52:1311–23.
  • Andersen PM, Abrahams S, Borasio GD, de Carvalho M, Chio A, Van Damme P, . EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS) – revised report of an EFNS task force. Eur J Neurol. 2012;19:360–75.
  • Janssens AI, Ruytings M, Al-Chalabi A, Chio A, Hardiman O, McDermott CJ, . A mapping review of international guidance on the management and care of amyotrophic lateral sclerosis (ALS). Amyotroph Lateral Scler Frontotemporal Degener. 2016;17:325–36.
  • Foley G, Timonen V, Hardiman O. Patients' perceptions of services and preferences for care in amyotrophic lateral sclerosis: a review. Amyotroph Lateral Scler. 2012;13:11–24.
  • Ward AL, Hammond S, Holsten S, Bravver E, Brooks BR. Power wheelchair use in persons with amyotrophic lateral sclerosis: changes over time. Assist Technol. 2015;27:238–45.
  • Greer N, Brasure M, Wilt TJ. Wheeled mobility (wheelchair) service delivery: scope of the evidence. Ann Intern Med. 2012;156:141–6.
  • Foley G, Timonen V, Hardiman O. Exerting control and adapting to loss in amyotrophic lateral sclerosis. Soc Sci Med. 2014;101:113–19.

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