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

Andreas Funke; Susanne Spittel; Torsten Grehl; Julian Grosskreutz; Dagmar Kettemann; Susanne Petri; Ute Weyen; Patrick Weydt; Johannes Dorst; Albert C. Ludolph; Petra Baum; Moritz Oberstadt; Berit Jordan; Andreas Hermann; Joachim Wolf; Matthias Boentert; Bertram Walter; Nadine Gajewski; André Maier; Christoph Münch; Thomas Meyer

doi:10.1080/21678421.2018.1431786

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

Andreas Funke, Susanne Spittel, Torsten Grehl, Julian Grosskreutz, Dagmar Kettemann, Susanne Petri, Ute Weyen, Patrick Weydt, Johannes Dorst, Albert C. Ludolph, Petra Baum, Moritz Oberstadt, Berit Jordan, Andreas Hermann, Joachim Wolf, Matthias Boentert, Bertram Walter, Nadine Gajewski, André Maier, Christoph MünchThomas Meyer^*

^*Corresponding author for this work

27 Citations (Scopus)

Abstract

Objective: The procurement of assistive technology devices (ATD) is an essential component of managed care in ALS. The objective was to analyze the standards of care for ATD and to identify challenges in the provision process. Methods: A cohort study design was used. We investigated the provision of 11,364 ATD in 1494 patients with ALS at 12 ALS centers in Germany over four years. Participants were patients that entered a case management program for ATD including systematic assessment of ATD on a digital management platform. Results: Wheelchairs (requested in 65% of patients), orthoses (52%), bathroom adaptations (49%), and communication devices (46%) were the most needed ATD. There was a wide range in the number of indicated ATD per patient: 1 to 4 ATD per patient in 45% of patients, 5 to 20 ATD in 48%, and >20 ATD in 7% of patients. Seventy percent of all requested ATD were effectively delivered. However, an alarming failure rate during procurement was found in ATD that are crucial for ALS patients such as powered wheelchairs (52%), communication devices (39%), or orthoses (21%). Leading causes for not providing ATD were the refusal by health insurances, the decision by patients, and the death of the patient before delivery of the device. Conclusions: The need for ATD was highly prevalent among ALS patients. Failed or protracted provision posed substantial barriers to ATD procurement. Targeted national strategies and the incorporation of ATD indication criteria in international ALS treatment guidelines are urgently needed to overcome these barriers.

Original language	English
Journal	Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Volume	19
Issue number	5-6
Pages (from-to)	342-350
Number of pages	9
ISSN	2167-8421
DOIs	https://doi.org/10.1080/21678421.2018.1431786
Publication status	Published - 03.07.2018
Externally published	Yes

Funding

This work was supported by the Joint Programme – Neurodegenerative Disease Research (BMBF; [grant number 01ED1402A]). The project is supported through the following funding organizations under the aegis of JPND (http://www.jpnd.eu): Agency for Innovation by Science and Technology and Research Foundation, Flanders region; Bundesministerium für Bildung und Forschung (BMBF), Germany; Economic and Social Research Council, United Kingdom; Health Research Board, Ireland; Ministry of Health and Ministry of Education, Universities and Research, Italy; The Netherlands Organization for Health Research and Development, The Netherlands (national regional organizations who are funding project, by country, in alphabetical order). The project was supported by the BMBF [grant number 16SV7711 and 02K16C220]. The authors wish to thank ‘‘Hilfe für ALS-kranke Menschen’’, ‘‘Angelika-von-Hagen- Fonds für Palliativmedizin bei der ALS’’ and ‘‘Bremer ALS Stiftung’’ for funding and continuous support.

Research Areas and Centers

Centers: Center for Neuromuscular Diseases

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1080/21678421.2018.1431786

Cite this

Funke, A., Spittel, S., Grehl, T., Grosskreutz, J., Kettemann, D., Petri, S., Weyen, U., Weydt, P., Dorst, J., Ludolph, A. C., Baum, P., Oberstadt, M., Jordan, B., Hermann, A., Wolf, J., Boentert, M., Walter, B., Gajewski, N., Maier, A., ... Meyer, T. (2018). Provision of assistive technology devices among people with ALS in Germany: a platform-case management approach. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 19(5-6), 342-350. https://doi.org/10.1080/21678421.2018.1431786

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

abstract = "Objective: The procurement of assistive technology devices (ATD) is an essential component of managed care in ALS. The objective was to analyze the standards of care for ATD and to identify challenges in the provision process. Methods: A cohort study design was used. We investigated the provision of 11,364 ATD in 1494 patients with ALS at 12 ALS centers in Germany over four years. Participants were patients that entered a case management program for ATD including systematic assessment of ATD on a digital management platform. Results: Wheelchairs (requested in 65% of patients), orthoses (52%), bathroom adaptations (49%), and communication devices (46%) were the most needed ATD. There was a wide range in the number of indicated ATD per patient: 1 to 4 ATD per patient in 45% of patients, 5 to 20 ATD in 48%, and >20 ATD in 7% of patients. Seventy percent of all requested ATD were effectively delivered. However, an alarming failure rate during procurement was found in ATD that are crucial for ALS patients such as powered wheelchairs (52%), communication devices (39%), or orthoses (21%). Leading causes for not providing ATD were the refusal by health insurances, the decision by patients, and the death of the patient before delivery of the device. Conclusions: The need for ATD was highly prevalent among ALS patients. Failed or protracted provision posed substantial barriers to ATD procurement. Targeted national strategies and the incorporation of ATD indication criteria in international ALS treatment guidelines are urgently needed to overcome these barriers.",

author = "Andreas Funke and Susanne Spittel and Torsten Grehl and Julian Grosskreutz and Dagmar Kettemann and Susanne Petri and Ute Weyen and Patrick Weydt and Johannes Dorst and Ludolph, {Albert C.} and Petra Baum and Moritz Oberstadt and Berit Jordan and Andreas Hermann and Joachim Wolf and Matthias Boentert and Bertram Walter and Nadine Gajewski and Andr{\'e} Maier and Christoph M{\"u}nch and Thomas Meyer",

note = "Publisher Copyright: {\textcopyright} 2018, {\textcopyright} 2018 World Federation of Neurology on behalf of the Research Group on Motor Neuron Diseases.",

year = "2018",

month = jul,

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doi = "10.1080/21678421.2018.1431786",

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Funke, A, Spittel, S, Grehl, T, Grosskreutz, J, Kettemann, D, Petri, S, Weyen, U, Weydt, P, Dorst, J, Ludolph, AC, Baum, P, Oberstadt, M, Jordan, B, Hermann, A, Wolf, J, Boentert, M, Walter, B, Gajewski, N, Maier, A, Münch, C & Meyer, T 2018, 'Provision of assistive technology devices among people with ALS in Germany: a platform-case management approach', Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, vol. 19, no. 5-6, pp. 342-350. https://doi.org/10.1080/21678421.2018.1431786

TY - JOUR

T1 - Provision of assistive technology devices among people with ALS in Germany

T2 - a platform-case management approach

AU - Funke, Andreas

AU - Spittel, Susanne

AU - Grehl, Torsten

AU - Grosskreutz, Julian

AU - Kettemann, Dagmar

AU - Petri, Susanne

AU - Weyen, Ute

AU - Weydt, Patrick

AU - Dorst, Johannes

AU - Ludolph, Albert C.

AU - Baum, Petra

AU - Oberstadt, Moritz

AU - Jordan, Berit

AU - Hermann, Andreas

AU - Wolf, Joachim

AU - Boentert, Matthias

AU - Walter, Bertram

AU - Gajewski, Nadine

AU - Maier, André

AU - Münch, Christoph

AU - Meyer, Thomas

PY - 2018/7/3

Y1 - 2018/7/3

N2 - Objective: The procurement of assistive technology devices (ATD) is an essential component of managed care in ALS. The objective was to analyze the standards of care for ATD and to identify challenges in the provision process. Methods: A cohort study design was used. We investigated the provision of 11,364 ATD in 1494 patients with ALS at 12 ALS centers in Germany over four years. Participants were patients that entered a case management program for ATD including systematic assessment of ATD on a digital management platform. Results: Wheelchairs (requested in 65% of patients), orthoses (52%), bathroom adaptations (49%), and communication devices (46%) were the most needed ATD. There was a wide range in the number of indicated ATD per patient: 1 to 4 ATD per patient in 45% of patients, 5 to 20 ATD in 48%, and >20 ATD in 7% of patients. Seventy percent of all requested ATD were effectively delivered. However, an alarming failure rate during procurement was found in ATD that are crucial for ALS patients such as powered wheelchairs (52%), communication devices (39%), or orthoses (21%). Leading causes for not providing ATD were the refusal by health insurances, the decision by patients, and the death of the patient before delivery of the device. Conclusions: The need for ATD was highly prevalent among ALS patients. Failed or protracted provision posed substantial barriers to ATD procurement. Targeted national strategies and the incorporation of ATD indication criteria in international ALS treatment guidelines are urgently needed to overcome these barriers.

AB - Objective: The procurement of assistive technology devices (ATD) is an essential component of managed care in ALS. The objective was to analyze the standards of care for ATD and to identify challenges in the provision process. Methods: A cohort study design was used. We investigated the provision of 11,364 ATD in 1494 patients with ALS at 12 ALS centers in Germany over four years. Participants were patients that entered a case management program for ATD including systematic assessment of ATD on a digital management platform. Results: Wheelchairs (requested in 65% of patients), orthoses (52%), bathroom adaptations (49%), and communication devices (46%) were the most needed ATD. There was a wide range in the number of indicated ATD per patient: 1 to 4 ATD per patient in 45% of patients, 5 to 20 ATD in 48%, and >20 ATD in 7% of patients. Seventy percent of all requested ATD were effectively delivered. However, an alarming failure rate during procurement was found in ATD that are crucial for ALS patients such as powered wheelchairs (52%), communication devices (39%), or orthoses (21%). Leading causes for not providing ATD were the refusal by health insurances, the decision by patients, and the death of the patient before delivery of the device. Conclusions: The need for ATD was highly prevalent among ALS patients. Failed or protracted provision posed substantial barriers to ATD procurement. Targeted national strategies and the incorporation of ATD indication criteria in international ALS treatment guidelines are urgently needed to overcome these barriers.

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

Abstract

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Research Areas and Centers

UN SDGs

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