- 作者：A.C. H¨¦ritier Barras ; R. Iancu Ferfoglia ; A. Mekideche ; A. Truffert ; D. Adler ; J.P. Janssens
- 刊名：Clinical Neurophysiology
- 出版年：2012
- 出版时间：October, 2012
- 年：2012
- 卷：123
- 期：10
- 页码：e105
- 全文大小：35 K
Introduction
There is to date no curative treatment for patients with amyotrophic lateral sclerosis (ALS), so supportive and palliative measures are the main goals of patient management. Prior studies suggest that a multidisciplinary approach improves patients¡¯ quality of life and survival.Methods
As of April 2010, Geneva University Hospitals have implemented a multidisciplinary longitudinal follow-up of patients with ALS. Every 3 months, patients and caregivers attend a day-clinic evaluation which includes the interventions of neurologists, pulmonologists, nutritionists, physiotherapists, occupational therapists, speech therapists, nurses, social workers, and a specialist in palliative care. This approach helps the patient to:
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have access to several specialists within 1 day and at the same place,
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anticipate complications such as respiratory failure, weight loss, swallowing problems, motor handicap, speech difficulties,
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adapt his environment to the progression of his disease to maintain the highest level of autonomy,
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receive administrative and financial support,
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discuss and express wishes as to advanced directives.
Results
To date, 40 patients aged from 41 to 76 years (17 women, 23 men) have integrated the multidisciplinary follow-up on an outpatient basis. Seventeen patients were electively put under non-invasive ventilation. No tracheostomy has so far been proposed. Advanced care planning was discussed and used to avoid inappropriate admissions to the intensive care unit (ICU). Ten patients underwent a gastrostomy. Sixteen deaths were recorded, occurred at home for 4 patients, in a long-term facility for 7 patients, in a medical ward for 4 patients and in the ICU for 1 patient.
Conclusions
In comparison with a more classical approach, this multidisciplinary approach gives a place to each member of the medical team and allows a holistic approach of the patient. Family and caregivers at home, such as occupational therapists, physiotherapists and nurses, can also regularly share information and experience with the hospital team. Specialists in medical bio-ethics and ICU regularly join the multidisciplinary team to share reflexions on sensitive topics such as tracheostomy or assisted suicide.
In a near future, a computerized database, including a prospective evaluation of quality of life and quality of care, will help us to evaluate the impact of our management on the patients¡¯ quality of life, and justify the continuance of this approach.