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 language | English |
|---|---|
| Pages (from-to) | 159-164 |
| Number of pages | 6 |
| Journal | Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders |
| Volume | 2 |
| Issue number | 3 |
| DOIs | |
| Publication status | Published - 2001 |
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Keywords
- Giving the diagnosis
- Motor neuron disease
- Nutrition
- Palliative care
- Treatment of symptoms
- Ventilation
ASJC Scopus subject areas
- Clinical Neurology
- Neurology
Cite this
Standards of palliative care for patients with amyotrophic lateral sclerosis : Results of a European survey. / Borasio, G. D.; Shaw, P. J.; Hardiman, O.; Ludolph, A. C.; Sales Luis, M. L.; Silani, V.
In: Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, Vol. 2, No. 3, 2001, p. 159-164.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - Standards of palliative care for patients with amyotrophic lateral sclerosis
T2 - Results of a European survey
AU - Borasio, G. D.
AU - Shaw, P. J.
AU - Hardiman, O.
AU - Ludolph, A. C.
AU - Sales Luis, M. L.
AU - Silani, V.
PY - 2001
Y1 - 2001
N2 - 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.
AB - 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.
KW - Giving the diagnosis
KW - Motor neuron disease
KW - Nutrition
KW - Palliative care
KW - Treatment of symptoms
KW - Ventilation
UR - http://www.scopus.com/inward/record.url?scp=0035665695&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=0035665695&partnerID=8YFLogxK
U2 - 10.1080/146608201753275517
DO - 10.1080/146608201753275517
M3 - Article
VL - 2
SP - 159
EP - 164
JO - Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders
JF - Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders
SN - 1466-0822
IS - 3
ER -