Amyotrophic Lateral Sclerosis: Improving Patient Care

Context

Amyotrophic lateral sclerosis (ALS), known by some as Lou Gehrig’s disease, is a neurodegenerative pathology of unknown origin that affects the motor neurons of the cerebral cortex and the spinal cord. It results in a rapidly progressive loss of motor functions, namely the use of one’s limbs, walking, swallowing, language, phonation, and breathing. To date there is no known cure. Non-pharmaceutical treatments such as physical therapy and occupational therapy play a heavy part in treating ALS patients, who become increasingly dependent on others in day-to-day activities. Multidisciplinary treatment allows an increase in survival of 7 to 9 months, a decrease in mortality at 1 year of about 30%, and improvement in patients’ quality of life. At the HUG, the Center for Amyotrophic Lateral Sclerosis and related conditions (CeSLA) is dedicated to fulfilling the needs of patients and their loved ones, with an emphasis on quality of care. Coordinated treatment at the HUG and at home is organized according to the patient’s wishes. Maintaining a degree of autonomy, both in mobility and communication, is another priority. However, as a solely hospital-based medical care unit, the CeSLA’s mandate does not include services at home.

Project

This project entails hiring a care coordinator, ideally a nurse by training, who can go to patients’ homes. This person’s goal is to strengthen the connections between the CeSLA caregivers at the HUG and the caregivers at home, to anticipate potential difficulties that could emerge between checkups, and to plan the day at CeSLA according to the patient’s needs.
Furthermore, the project involves participation in two research programs:
• the “Avatar” project, which studies how dyspnea interferes with cognitive functions and is conducted in collaboration with EPFL and INSERM-PARIS
• the “Neuropsychological” project, a longitudinal study of cognitive disorders and language in ALS patients, conducted by the CeSLA team in collaboration with the Faculty of Psychology and Sciences at the University of Geneva.
This project is supported by the ProFutura Foundation.

project manager

Dr. Anne-Chantal Héritier Barras, Deputy Head Physician, Directorate of Medicine and Quality, Geneva University Hospitals