multidisciplinary als team: russian experience lev brylev, (russia), md, phd, head of neurologic...
TRANSCRIPT
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
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
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.
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
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Unpublished data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
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
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”
PEG placement
Neurology. Oct 13, 2009; 73(15): 1218–1226.
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
PEG availability
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
Facebook secret group
Online patient records
Patients’ expression of gratitude (n=58)
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.
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
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
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
