multidisciplinary als team: russian experience lev brylev, (russia), md, phd, head of neurologic...
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Multidisciplinary ALS team: Russian experience
Lev Brylev, (Russia), MD, PhD, Head of neurologic department in Moscow city
hospital#12, ALS Team leader in Martha-Mary medical center "Miloserdie"
11th annual Nordic ALS/MND Conference
21-23 August, 2015
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M-M medicalcenter
Research centerof Neurology
Home care OnlineCity hospital
• Diagnosis• Research
• Outpatient clinic• Psychological
groups• Equipment and
nutrition
• Nurse• Physician• Psychologist• Priest• Volunteer• Social workers
• PEG• Tracheostomy• Ventilation
adjustment
alsfund.rumiloserdie.ruair4help.ru
• Information• Fundraising
2011 - 2015500 patients applied to our organization from 20 regions of Russia107 are currently closely followed in Moscow
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Evidance-based approach
• Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis: Multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review) Miller R. G. , MD et al. Neurology October 13, 2009 vol. 73 no. 15 1227-1233
• Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis: Drug, nutritional, and respiratory therapies (an evidence-based review) Miller R. G. , MD et al. Neurology October 13, 2009 vol. 73 no. 15 1218-1226
• EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS)--revised report of an EFNS task force. Eur J Neurol. 2012 Mar;19(3):360-75.
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EFNS guidelines on the Clinical Management of Amyotrophic Lateral Sclerosis (MALS) – revised report of an EFNS task force
European Journal of NeurologyVolume 19, Issue 3, pages 360-375, 14 SEP 2011 DOI: 10.1111/j.1468-1331.2011.03501.xhttp://onlinelibrary.wiley.com/doi/10.1111/j.1468-1331.2011.03501.x/full#f1
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Noninvasive ventilation
Bourke SC Lancet Neurol 2006:5:140-7
Cochrane Database Syst Rev. 2013 Mechanical ventilation for amyotrophic lateral sclerosis/motor neuron disease. Radunovic A1, Annane D, Rafiq MK, Mustfa N.
No study was identified that addressed the adverse effects of NIV.
Unpublished data
N=41 N=46
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Invasive ventilation
• 27 patients, only 3 of them had an advanced decision to go for tracheostomy
• 20 patients were taken home– 11 are alive– 9 died, mean ventilation time 412 days
• 7 died in ICU, mean ventilation time 40 days• Mean delay in providing ventilator is 39 days
Patients and their families do not make decisions in advance
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Managing Dyspnoe
• Lorazepam for laryngospasms• Morphine s\c
– We were first physicians, who prescribed morphine for dyspnoe in ALS patient
– We try to change regulations and guidelines to make it available for ALS patients
Physicians are scared to “break the law”
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PEG placement
Neurology. Oct 13, 2009; 73(15): 1218–1226.
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Gastrostomy• 35% of patients had 20% BMI decrease on the first
visit• 20% of patients had FVC <50% before PEG
placementNumber of PEG
2012 42013 242014 35
Patients and their families do not make decisions in advance
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PEG availability
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Survival of Irish ALS patients according to the clinic type attended, 1996–2000.
B J Traynor et al. J Neurol Neurosurg Psychiatry 2003;74:1258-1261
©2003 by BMJ Publishing Group Ltd
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Facebook secret group
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Online patient records
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Patients’ expression of gratitude (n=58)
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Survey on death experience (n=58)
Just 1/3 of people spoke about death at all, and ¼ of people were discussing one's preferred way/place to die once or several times.
Doctors, priests and volunteers of charity foundations are more efficient in this quality than are family members.
About 2/3 of those who have never discussed death with their relatives, were confident that they have died in a way they liked.
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Next steps
• Improve palliative care– Сommunication skills– Morphine availability– Hospice for ALS patients
• Spread knowledge• National guidelines and protocols• Fundraising• Participate in research• Participate in international activities
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Team• Volunteers
– Natalia Semina– Marina Bialik– Marina Vasilieva– Anna Kas’yanova– Anna Vorob’eva– Elena Lysogorskaya– Vera Fominikh– Alexey Vasiliev– Maria Ivanova
• Nurses– Sveta Sergeeva– Ekaterina Dikhter
• Social workers– Andrey Prokofiev– Elena Timoschuk
• Neurologists– Lev Brylev– Vadim Parshikov
• Pulmonologist– Vasiliy Shtabnitskiy
• Intensive care– Rita Fominikh– Egor Larin
• Palliative care– Anna Sonkina
– Anna Hansen• Psychologist
– Oksana Orlova– Elena Sergeeva
• Physical therapy– Diana Schukina
• Music therapy– Alisa Apreleva– Anastasiya Beltukova
• Priest– Antoniy
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Special thanks
• Kathy Mitchel, Professor-retired Algonquin College, Ottawa Ontario, Canada
• Richard Sloan, Joseph Weld Hospice Medical Director-retired, UK
• Anna Hansen, clinical nurse specialist, Norway• Per Halvor Lunde, physical therapist, Norway• David M. Steinhorn, MD, Division of Critical
Care, Sacramento, USA
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