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Palliative care studies review in Russia in 2010-2013

Palliative care studies review in Russia in 2010-2013. Gleb Levitsky Md PhD Director Russian Charity ALS Foundation. GREETINGS FROM NATALIA RYBAKOVA – THE QUEEN OF RUSSIAN PALS. PALLIATIVE CARE STUDIES 2010-2013. EMOTIONAL PROFILE IN PALS AND THEIR FAMILY MEMBERS COGNITIVE FUNCTIONS

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Palliative care studies review in Russia in 2010-2013

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  1. Palliative care studies review in Russia in 2010-2013 GlebLevitskyMd PhD Director Russian Charity ALS Foundation

  2. GREETINGS FROM NATALIA RYBAKOVA – THE QUEEN OF RUSSIAN PALS

  3. PALLIATIVE CARE STUDIES 2010-2013 • 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 email), FTD Score (for PALS only) Together with: VadimGilodMd PhD Dept Suicidology, Moscow City Hospital # 20 Dr AndreyLevitsky, private psychiatrist and narcologist, visits at home

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

  6. Spectrum ofsituation-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 Together with Professor of Neurology Oleg Levin MD PhD Dept of Neurology Qualification Improvement Academy • 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.

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

  11. Management of mental disorders • Withdrawal of cholinolytics for sialorea (change to Dysport or Irradiation) • Cholinomimetic (Galantamin in low dose) • atypicneuroleptic (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 Together with Professor of Pulmonology Sergey Babak MD PhD Centrosoyuz Hospital N=37 Males 22 Females 15 Age range 36-72 • 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

  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 DAY NIGHT 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 Orbicularisoris 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 tosevere 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 dysarthriavs 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) • Moderate effect on sialorea • 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 • Moderate effect on sialorea in mild and moderate bulbar ALS • No cognitive decline

  27. Sialorea in ALS • Dysport • Excellent effect on sialorea in 250 U + Amitripyiline 25-37.5 mg in dysarthricbALS used each 3-6 months • Excellent effect on sialorea in 500 U in anarthricbALS each 3-6 months • 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! GlebLevitsky MD PhD Director Russian Charity ALS Foundation + 7 926 182 18 99 alsrus@gmail.com http://alsportal.ru, http://r-health.ru

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