1. Multidisciplinary ALS team: Russian experience
11th annual Nordic ALS/MND Conference
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"
 21-23 August, 2015

2. 500 patients applied to our organization from 20 regions of Russia
Research center
of Neurology
M-M medical
center
Home care
City hospital
Online
Diagnosis
Research
Outpatient clinic
Psychological groups
Equipment and nutrition
Nurse
Physician
Psychologist
Priest
Volunteer
Social workers
PEG
Tracheostomy
Ventilation adjustment
alsfund.ru
miloserdie.ru
air4help.ru
Information
Fundraising
500 patients applied to our organization from 20 regions of Russia
107 are currently closely followed in Moscow

3. 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
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
EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS)--revised report of an EFNS task force. Eur J Neurol Mar;19(3):

4. EFNS guidelines on the Clinical Management of Amyotrophic Lateral Sclerosis (MALS) – revised report of an EFNS task force
 Flowchart for the management of respiratory dysfunction in amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND). NIPPV, non‐invasive positive pressure.
© IF THIS IMAGE HAS BEEN PROVIDED BY OR IS OWNED BY A THIRD PARTY, AS INDICATED IN THE CAPTION LINE, THEN FURTHER PERMISSION MAY BE NEEDED BEFORE ANY FURTHER USE. PLEASE CONTACT WILEY'S PERMISSIONS DEPARTMENT ON OR USE THE RIGHTSLINK SERVICE BY CLICKING ON THE 'REQUEST PERMISSION' LINK ACCOMPANYING THIS ARTICLE. WILEY OR AUTHOR OWNED IMAGES MAY BE USED FOR NON-COMMERCIAL PURPOSES, SUBJECT TO PROPER CITATION OF THE ARTICLE, AUTHOR, AND PUBLISHER.
European Journal of Neurology Volume 19, Issue 3, pages , 14 SEP 2011 DOI: /j x

6. Noninvasive ventilation
Bourke SC Lancet Neurol 2006:5:140-7
Unpublished data
Evidence from a single randomised trial of NIV involving 41 participants suggest that it significantly improves and maintains quality of life and prolongs survival in people with ALS. Survival and some measures of quality of life were significantly improved in the subgroup of people with better bulbar function, but not in those with severe bulbar impairment. We believe adverse effects related to NIV should be systematically reported as at present there is little information on this subject.
Cochrane Database Syst Rev 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.

7. 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

9. 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”

10. PEG placement
Neurology. Oct 13, 2009; 73(15): 1218–1226.

11. Gastrostomy Number of PEG 2012 4 2013 24 2014 35
35% of patients had 20% BMI decrease on the first visit
20% of patients had FVC <50% before PEG placement
Number of PEG
2012 4
2013 24
2014 35
Patients and their families do not make decisions in advance

12. PEG availability

13. Survival of Irish ALS patients according to the clinic type attended, 1996–2000.
B J Traynor et al. J Neurol Neurosurg Psychiatry 2003;74:
©2003 by BMJ Publishing Group Ltd

14. Facebook secret group

15. Online patient records

16. Patients’ expression of gratitude (n=58)

17. 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.
This might reveal unawareness of the relatives about the very wishes of their deceased family members.
family members are reporting on their behalf

18. Next steps Improve palliative care Spread knowledge
Сommunication skills
Morphine availability
Hospice for ALS patients
Spread knowledge
National guidelines and protocols
Fundraising
Participate in research
Participate in international activities

19. Team Priest Music therapy Volunteers Social workers Psychologist
Anna Hansen
Natalia Semina
Andrey Prokofiev
Psychologist
Marina Bialik
Elena Timoschuk
Oksana Orlova
Marina Vasilieva
Neurologists
Elena Sergeeva
Anna Kas’yanova
Lev Brylev
Physical therapy
Anna Vorob’eva
Vadim Parshikov
Diana Schukina
Elena Lysogorskaya
Pulmonologist
Music therapy
Vasiliy Shtabnitskiy
Alisa Apreleva
Vera Fominikh
Anastasiya Beltukova
Alexey Vasiliev
Intensive care
Maria Ivanova
Rita Fominikh
Priest
Nurses
Egor Larin
Antoniy
Sveta Sergeeva
Palliative care
Ekaterina Dikhter
Anna Sonkina

20. 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

22. Lev.brylev@gmail.com www.alsfund.ru