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

Abstract

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.

Keywords:

• Assistive devices
• medical interventions
• amyotrophic lateral sclerosis
• public health organization
• healthcare provision

Declaration of interest

Authors have no conflicts of interests to declare.

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

This work was funded by the JPND (NEEDSinALS; www.NEEDSinALS.com) and the BMBF (PaCeMed, MND-Net).