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Palliative care in amyotrophic lateral sclerosis clinics: A survey of NEALS consortium membership
Author(s) -
Mehta Tejas R.,
Bayat Elham,
Govindarajan Raghav
Publication year - 2021
Publication title -
muscle and nerve
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.025
H-Index - 145
eISSN - 1097-4598
pISSN - 0148-639X
DOI - 10.1002/mus.27203
Subject(s) - amyotrophic lateral sclerosis , palliative care , multidisciplinary approach , medicine , family medicine , motor neurone disease , disease , nursing , social science , sociology
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.