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Palliative care studies review in Russia in 2010-2013 Gleb Levitsky Md PhD Director Russian Charity ALS Foundation.

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Presentation on theme: "Palliative care studies review in Russia in 2010-2013 Gleb Levitsky Md PhD Director Russian Charity ALS Foundation."— Presentation transcript:

1 Palliative care studies review in Russia in Gleb Levitsky Md PhD Director Russian Charity ALS Foundation

2 GREETINGS FROM NATALIA RYBAKOVA – THE QUEEN OF RUSSIAN PALS

3 PALLIATIVE CARE STUDIES EMOTIONAL PROFILE IN PALS AND THEIR FAMILY MEMBERS COGNITIVE FUNCTIONS NIPPV SIALORREA

4 EMOTIONAL PROFILE IN PALS AND THEIR FAMILY MEMBERS 118 PALS 97 family members Eye-to-eye consultation, HAM-D (eye-to eye, by phone and ), FTD Score (for PALS only) Together with: Vadim Gilod Md PhD Dept Suicidology, Moscow City Hospital # 20 Dr Andrey Levitsky, private psychiatrist and narcologist, visits at home

5 MENTAL DISORDERS IN PALS AND THEIR FAMILY MEMBERS IN RUSSIA PALS – 85% FM-52%

6 Spectrum of situation-mediated mental disorders in PALS and their FM

7 TOXIC DEPENDENCIES IN PALS AND THEIR FAMILY MEMBERS IN RUSSIA PALS – 49% FM-80%

8 Cognitive change in PALS 28% frontotemporal cognitive change Medium log rank 1,47 [1,92; 1,26] 4,2% frontotemporal dementia Medium log rank -0,4 [1,07; -3,09] Overall 32,2% Coincidences of ALS and schizophrenia, schizoaffective and bipolar disorder were described. These cases have very poor prognosis. Together with Professor of Neurology Oleg Levin MD PhD Dept of Neurology Qualification Improvement Academy

9 Withdrawal of cholinolytic cocktail Patient H., 62 years old, bulbar ALS, rapid progression by ALSFRSR ALSAQ40 total 207,5 ->310 emot. 22,5->55 HAMD 7 ->13 CNSLS 7/9 -> 7/14 FTD Log rank 1,9 -> 5,39 Montreal Cog 19 -> 26

10 More mistakes in graphic tasks Less mistakes in graphic tasks Good recognition, but mistakes spelling No mistakes in spelling CHOLINOLYTIC COCKLAIL FOR SIALORREA WITHDRAWAL OF COCKTAIL

11 Management of mental disorders Withdrawal of cholinolytics for sialorea (change to Dysport or Irradiation) Cholinomimetic (Galantamin in low dose) atypic neuroleptic (s), may be in drops antidepressant (s) hypnotic gopantenic acid

12 Patient R., 55 years old Lumbar onset ALS with bulbar involvement, duration 5 years, artificial ventilation and PEG Therapy for 3 months Risperidon 1-2 drops 3 times a day Haloperidol 1.5 mg ¼ tab 3 times a day Pipophesin 25 mg 3 rimes a day Gopantenic acid syrup 10% 5 ml 3 times a day Diazepam 5 mg 2 times a day Result: HAMD 30->13 CNSLS 20/39 -> 13/19

13 NIPPV studies N=37 Males 22 Females 15 Age range Spinal ALS N= 22 FVC >50% FVC <50% Bulbar ALS N=15 FVC > 65% FVC < 65% S-mode of NIPPV (the lowest expenses) 80% of PALS used ipap 10 epap 4 cm and increased pressures only once Together with Professor of Pulmonology Sergey Babak MD PhD Centrosoyuz Hospital

14 Duration of ALS in PALS adapted and not adapted to NIPPV 30.3±11.7 and 20.7±11.7 months р=0.033

15 Duration of SPINAL ALS in PALS adapted and not adapted to NIPPV 24.8 ± 7.1 and 16.1 ± 5.3, р=0.041

16 Spirometry in spinal ALS on NIPPV

17 Spirometry in ALS on NIPPV Patient Sch., 54 years, cervical onset of spinal ALS, slow progression by ALSFRSR FVC 70% in March 2012 and FVC 66% in September 2012 after Ipap 12 Epap 6 cm 4 hours per day

18 Patterns of adaptation to NIPPV Gradual adaptation Forced adaptation Inadaptation/ Desadaptation

19 GRADUAL adaptation DAY NIGHT

20 FORCED adaptation DAY NIGHT

21 Inadaptation / desadaptation DAY NIGHT

22 NIPPV in bulbar ALS There are prerequisites to think that in bulbar ALS NIPPV may prolong survival when it is started in patients with FVC above 65%, but there are few patients for analysis Orbicularis oris muscle paresis prevents from exact measurement of FVC by spirometry or body pletismography Early tracheostomy with NIPPV like VIVO-40 (BREAS) is another option to prolong life in bALS

23 COMPULSORY ALS MANAGEMENT If a PALS in Russia has FTD/FN cognitive impairment and moderate to severe depression and declines aggressive treatments a neurologist and 3 psychiatrists register his incapacity to make decisions himself, he is recognized dangerous for himself and for emotional well being of his relatives, and early tracheostomy and PEG are performed in a compulsory manner

24 Sialorea in ALS Cholynolytic cocktail (Atropine drops, Atrovent solution, Amytriptiline) Scopoderm Plaster Buscopan Dysport (250 U in dysarthria vs 500 U in anarthria) Irradiation of parotids 6-7 Gr (single)* *Together with Lev Epifanov MD PhD Dept of Radiotherapy Moscow City Hospital # 14

25 Sialorea in ALS Cholynolytic cocktail (Atropine drops, Atrovent solution, Amytriptiline) 1)Moderate effect on sialorea 2)Decline of cognitive function Scopoderm Plaster 1) Excellent effect on sialorea 2) Decline of cognitive function

26 Sialorea in ALS Buscopan Benefits- does not enter CNS, no central cholinolytic effect Disadvantages – not recommended for long- term use 1)Moderate effect on sialorea in mild and moderate bulbar ALS 2)No cognitive decline

27 Sialorea in ALS Dysport 1)Excellent effect on sialorea in 250 U + Amitripyiline mg in dysarthric bALS used each 3-6 months 2)Excellent effect on sialorea in 500 U in anarthric bALS each 3-6 months 3)No cognitive decline 500 U in dysarthric bulbar ALS can exceed anarthria!

28 Sialorea in ALS Irradiation of parotids 6-7 Gr (single) Excellent effect on sialorea Can not be combined with Dysport Follow-up studies are required to determine the interval of repeated procedure

29 THANK YOU! СПАСИБО! Gleb Levitsky MD PhD Director Russian Charity ALS Foundation


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