TY - JOUR
T1 - Palliative care in amyotrophic lateral sclerosis
T2 - A review of current international guidelines and initiatives
AU - Bede, Peter
AU - Oliver, David
AU - Stodart, James
AU - Van Den Berg, Leonard
AU - Simmons, Zachary
AU - Brannagáin, Doiminic Ó
AU - Borasio, Gian Domenico
AU - Hardiman, Orla
PY - 2011/4
Y1 - 2011/4
N2 - Background: Amyotrophic lateral sclerosis (ALS) is a relentlessly progressive neurodegenerative condition. Optimal management requires a palliative approach from diagnosis with emphasis on patient autonomy, dignity and quality of life. Objective: To conduct a systematic analysis of the type, level and timing of specialist palliative care intervention in ALS. Results: Despite an international consensus that ALS management should adopt a multidisciplinary approach, integration of palliative care into ALS management varies considerably across health care systems. Late referral to palliative services in ALS is not uncommon and may impact negatively on the quality of life of ALS patients and their caregivers. However, common themes and principles of engagement can be identified across different jurisdictions, and measurement systems have been established that can assess the impact of palliative care intervention. Conclusions: There is considerable evidence that palliative care intervention improves quality of life in patients and carers. International consensus guidelines would assist in the development of a framework for active palliative care engagement in ALS and other neurodegenerative diseases.
AB - Background: Amyotrophic lateral sclerosis (ALS) is a relentlessly progressive neurodegenerative condition. Optimal management requires a palliative approach from diagnosis with emphasis on patient autonomy, dignity and quality of life. Objective: To conduct a systematic analysis of the type, level and timing of specialist palliative care intervention in ALS. Results: Despite an international consensus that ALS management should adopt a multidisciplinary approach, integration of palliative care into ALS management varies considerably across health care systems. Late referral to palliative services in ALS is not uncommon and may impact negatively on the quality of life of ALS patients and their caregivers. However, common themes and principles of engagement can be identified across different jurisdictions, and measurement systems have been established that can assess the impact of palliative care intervention. Conclusions: There is considerable evidence that palliative care intervention improves quality of life in patients and carers. International consensus guidelines would assist in the development of a framework for active palliative care engagement in ALS and other neurodegenerative diseases.
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U2 - 10.1136/jnnp.2010.232637
DO - 10.1136/jnnp.2010.232637
M3 - Article
C2 - 21297150
AN - SCOPUS:79952739161
SN - 0022-3050
VL - 82
SP - 413
EP - 418
JO - Journal of Neurology, Neurosurgery and Psychiatry
JF - Journal of Neurology, Neurosurgery and Psychiatry
IS - 4
ER -