Andreas Funke1, Susanne Spittel1, Torsten Grehl2, Julian Grosskreutz3, Dagmar Kettemann1, Susanne Petri4, Ute Weyen5, Patrick Weydt6, Johannes Dorst7, Albert C Ludolph7, Petra Baum8, Moritz Oberstadt8, Berit Jordan9, Andreas Hermann10,11, Joachim Wolf12, Matthias Boentert13, Bertram Walter14, Nadine Gajewski14, André Maier1, Christoph Münch1,14, Thomas Meyer1,14. 1. a Outpatient Center for ALS and other Motor Neuron Disorders , Charité - Universitätsmedizin Berlin , Berlin , Germany. 2. b Department of Neurology, Outpatient Center for ALS and other Motor Neuron Disorders , Alfried Krupp Krankenhaus , Essen , Germany. 3. c Hans Berger Department of Neurology , University Hospital Jena , Jena , Germany. 4. d Department of Neurology , Medizinische Hochschule Hannover , Hannover , Germany. 5. e Department of Neurology, Outpatient Center for ALS and other Motor Neuron Disorders , Berufsgenossenschaftliches Universitätsklinikum Bergmannsheil , Bochum , Germany. 6. f Department of Neurodegenerative Diseases and Gerontopsychiatry , University of Bonn , Bonn , Germany. 7. g Department of Neurology , University of Ulm , Ulm , Germany. 8. h Department of Neurology , Universitätsklinikum Leipzig , Leipzig , Germany. 9. i Department of Neurology , Martin-Luther-University Halle-Wittenberg , Halle (Saale) , Germany. 10. j Department of Neurology , Technische Universität Dresden , Dresden , Germany. 11. k Research Site Dresden , German Center for Neurodegenerative Diseases (DZNE) , Dresden , Germany. 12. l Department of Neurology , Diakonissenkrankenhaus Mannheim , Mannheim , Germany. 13. m Department for Sleep Medicine and Neuromuscular Disorders , Universitätsklinikum Münster , Münster , Germany , and. 14. n Ambulanzpartner Soziotechnologie APST GmbH , Berlin , Germany.
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.
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 ALSpatients 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 ALSpatients. 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.
Entities:
Keywords:
Amyotrophic lateral sclerosis; assistive technology devices; augmentative and alternative communication devices; case management; electric-powered wheelchairs; motor neuron disease; platform; provision
Authors: Veronika van der Wardt; Hannah Seipp; Annette Becker; Catharina Maulbecker-Armstrong; Rebecca Kraicker; Annika Schneider; Andreas Heitz; Ulf Seifart Journal: Pilot Feasibility Stud Date: 2021-12-21