Healthcare provision in amyotrophic lateral sclerosis: procedures, queries and pitfalls in Germany and Poland

• Published in: Amyotrophic lateral sclerosis and frontotemporal degeneration Vol. 21; no. 3-4; pp. 193 - 202
• Main Authors: Barć, Krzysztof, Weber, Christian, Maksymowicz-Śliwińska, Anna, Ciećwierska, Katarzyna, Helczyk, Olga, Ludolph C., Albert, Kuźma-Kozakiewicz, Magdalena, Lulé, Dorothée
• Format: Journal Article
• Language: English
• Published: England Taylor & Francis 02.04.2020
• Subjects: amyotrophic lateral sclerosis; Assistive devices; healthcare provision; medical interventions; public health organization; medical interventions; public health organization; healthcare provision; Assistive devices; amyotrophic lateral sclerosis
• ISSN: 2167-8421; 2167-9223; 2167-9223
• DOI: 10.1080/21678421.2020.1746345

There are a number of physical restrictions that develop in the course of amyotrophic lateral sclerosis (ALS). While loss of speech and motor control may be partially compensated by the support of assistive devices, swallowing difficulty and respiratory insufficiency require medical interventions (percutaneous endoscopic gastrostomy, noninvasive, and invasive ventilation). Based on the data collected within the NEEDSinALS study, we found major differences in personal satisfaction with the financing, healthcare provision, medical infrastructure, and regulations of German and Polish ALS patients, despite minor differences in economic burden caused by the disease. In order to explain this phenomenon, we thoroughly reviewed the legal basis, structure and organization of the healthcare systems in Germany and Poland to determine the range of obstacles in the everyday lives of patients and their caregivers that are attempting to attain an assistive device or care after the start of medical interventions.