Standards of palliative care for patients with amyotrophic lateral sclerosis: results of a European survey.
BACKGROUND
Amyotrophic lateral sclerosis (ALS) may be viewed as a paradigmatic disease for palliative care in neurodegenerative disorders. However, standards of care for ALS are known anecdotally to differ between and even within countries.


METHODS
A survey was conducted among the members of the European ALS Study Group on standards of palliative care in the clinical management of patients with ALS and their families, by means of a questionnaire of 111 questions in the following areas: giving the diagnosis, treatment of symptoms, nutrition, community services, respiratory support, and terminal care. Of 110 questionnaires sent out, 73 (66%) were completed and returned from 18 countries, including all major ALS centres in Europe.


RESULTS
The main areas of consensus included: presenting the diagnosis in the presence of a relative (85%) and offering a short-term follow-up (90%), regular weight checks (82%), availability of percutaneous endoscopic gastrostomy (PEG) (94%), and discussion of respiratory issues (90%). The main differences between centres concerned symptomatic drug treatment, availability of services, ventilation and terminal care. An additional survey shows considerable interest by the centres in palliative care trials.


CONCLUSIONS
Great efforts are made by the centres to offer the best possible palliative care to ALS patients. The discrepancies in the type of care offered might be resolved by adopting common standards, on the basis of available evidence and mutual consensus. Several areas of ALS patient care would benefit from controlled studies to establish an evidence base for treatment decisions.
Borasio
G D
GD
Interdisciplinary Palliative Care Unit and Department of Neurology, University of Munich, Germany. Borasio@lrz.uni-muenchen.de
Shaw
P J
PJ
Hardiman
O
O
Ludolph
A C
AC
Sales Luis
M L
ML
Silani
V
V
D000690:Amyotrophic Lateral Sclerosis / Q000175:diagnosis / Q000453:epidemiology / Q000503:physiopathology / Q000628:therapy*; D003153:Community Health Services; D005060:Europe / Q000453:epidemiology; D005774:Gastrostomy; D019538:Health Care Surveys / Q000706:statistics & numerical data*; D006801:Humans; D009747:Nutritional Physiological Phenomena; D010166:Palliative Care / Q000379:methods / Q000592:standards* / Q000639:trends; D010361:Patients / Q000706:statistics & numerical data*; D012138:Respiratory Therapy; D012189:Retrospective Studies; D019452:Terminally Ill; D014797:Vital Capacity