Palliative care in amyotrophic lateral sclerosis clinics: A survey of NEALS consortium membership
Abstract
Introduction
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative condition managed with a multidisciplinary approach. Palliative care is important for this approach, but there is a lack of recommendations for the role and involvement of palliative medicine (PM) specialists in multidisciplinary ALS care.
Methods
This questionnaire-based survey assessed the state of palliative care in selective sites that are a part of Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS).
Results
Twenty-seven percent of the sites included palliative care specialists as a part of their ALS clinics and they were introduced to the patients and family by ALS specialists (75.94%) usually at an advanced stage of ALS.
Discussion
Our study when compared with other study results having a similar aim showed that there is a variability in the practice of palliative care specialists in ALS clinics. Having evidence-based guidelines will help in the management of ALS patients more effectively.
CONFLICTS OF INTEREST
Dr. Raghav Govindarajan serves on the advisory board of Alexion Pharmaceuticals, Argenx Pharmaceuticals, Mitsubishi Tanabe Pharmaceuticals, Catalyst pharmaceuticals, and has received research support from Alexion Pharmaceuticals, Ra Pharmaceuticals, Strongbridge Pharmaceuticals, American Academy of Neurology, AMARC Enterprises/Poly-MVA, Dysimmune Foundation and InfuCare. He has received speaking honorarium from Alexion Pharmaceuticals, Mitsubishi Tanabe Pharmaceuticals, Catalyst Pharmaceuticals, Muscular Dystrophy Association and publication honorarium from Springer Publishing, USA.
Open Research
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available from the corresponding author upon reasonable request.
