Standards of palliative care for patients with amyotrophic lateral sclerosis: Results of a European survey

G. D. Borasio, P. J. Shaw, O. Hardiman, A. C. Ludolph, M. L. Sales Luis, V. Silani

Research output: Contribution to journalArticle

Abstract

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. Method: 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. Conclusion: 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.

Original languageEnglish
Pages (from-to)159-164
Number of pages6
JournalAmyotrophic Lateral Sclerosis and Other Motor Neuron Disorders
Volume2
Issue number3
DOIs
Publication statusPublished - 2001

Keywords

  • Giving the diagnosis
  • Motor neuron disease
  • Nutrition
  • Palliative care
  • Treatment of symptoms
  • Ventilation

ASJC Scopus subject areas

  • Clinical Neurology
  • Neurology

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