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MALADIE NEUROLOGIQUE

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Self-perceived knowledge and comfort discussing palliative care and end-of-life issues among professionals managing neuroinflammatory diseases

BEN-ZACHARIA, Aliza B. ; BETHOUX, Francois A. ; VOLANDES, Angelo
JOURNAL OF PALLIATIVE MEDICINE, 16/10/2020, Pagination inconnue

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Who cares for the bereaved? - a national survey of family caregivers of people with motor neurone disease

AOUN, Samar M. ; CAFARELLA, Paul A. ; RUMBOLD, Bruce ; THOMAS, Geoff ; HOGDEN, Anne ; JIANG, Leanne ; GREGORY, Sonia ; KISSANE, David W.
Amyotrophic lateral sclerosis and frontotemporal degeneration, 10/09/2020, p. 1-11

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Requested withdrawal of gastrostomy feeding in motor neurone disease

WAKEFIELD, Donna ; HANSON, Sarah Rhiannon
BMJ supportive and palliative care, 24/07/2020, Pagination inconnue

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Therapeutic options for patients with refractory status epilepticus in palliative settings or with a limitation of life-sustaining therapies - a systematic review

WILLEMS, Laurent M. ; BAUER, Sebastian ; JAHNKE, Kolja ; VOSS, Martin ; ROSENOW, Felix ; STRZELCZYK, Adam
CNS drugs, 08/2020, vol.34, n°8, p. 801-826

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Thème : Médicaments - Pharmacie.

REVUE SYSTEMATIQUE ; MALADIE NEUROLOGIQUE ; THERAPEUTIQUE MEDICAMENTEUSE ; DEMARCHE PALLIATIVE

BACKGROUND: Refractory status epilepticus (RSE) represents a serious medical condition requiring early and targeted therapy. Given the increasing number of elderly or multimorbid patients with a limitation of life-sustaining therapy (LOT) or within a palliative care setting (PCS), guidelines-oriented therapy escalation options for RSE have to be omitted frequently.
OBJECTIVES: This systematic review sought to summarize the evidence for fourth-line antiseizure drugs (ASDs) and other minimally or non-invasive therapeutic options beyond guideline recommendations in patients with RSE to elaborate on possible treatment options for patients undergoing LOT or in a PCS.
METHODS: A systematic review of the literature in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, focusing on fourth-line ASDs or other minimally or non-invasive therapeutic options was performed in February and June 2020 using the MEDLINE, EMBASE and Cochrane databases. The search terminology was constructed using the name of the specific ASD or therapy option and the term 'status epilepticus' with the use of Boolean operators, e.g. "(brivaracetam) AND (status epilepticus)". The respective Medical Subject Headings (MeSH) and Emtree terms were used, if available.
RESULTS: There is currently no level 1, grade A evidence for the use of ASDs in RSE. The best evidence was found for the use of lacosamide and topiramate (level 3, grade C), followed by brivaracetam, perampanel (each level 4, grade D) and stiripentol, oxcarbazepine and zonisamide (each level 5, grade D). Regarding non-medicinal options, there is little evidence for the use of the ketogenic diet (level 4, grade D) and magnesium sulfate (level 5, grade D) in RSE. The broad use of immunomodulatory or immunosuppressive treatment options in the absence of a presumed autoimmune etiology cannot be recommended; however, if an autoimmune etiology is assumed, steroid pulse, intravenous immunoglobulins and plasma exchange/plasmapheresis should be considered (level 4, grade D). Even if several studies suggested that the use of neurosteroids (level 5, grade D) is beneficial in RSE, the current data situation indicates that there is formal evidence against it.
CONCLUSIONS: RSE in patients undergoing LOT or in a PCS represents a challenge for modern clinicians and epileptologists. The evidence for the use of ASDs in RSE beyond that in current guidelines is low, but several effective and well-tolerated options are available that should be considered in this patient population. More so than in any other population, advance care planning, advance directives, and medical ethical aspects have to be considered carefully before and during therapy.

Origine : PubMed

Palliative care needs and care giver burden in neurodegenerative diseases - a cross sectional study

LITHIN, Zacharias ; THOMAS, Priya T. ; WARRIER, G. Manjusha ; BHASKAR, Adhin ; NASHI, Saraswathi ; VENGALIL, Seena ; POLAVARAPU, Kiran ; KUMAR, Preethish ; YADAV, Ravi ; ALLADI, Suvarna ; ATCHAYARAM, Nalini ; PAL, Pramod K.
Annals of Indian Academy of Neurology, 06/2020, vol.23, n°3, p. 313-317

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The attitudes of progressive neurological disease patients and their family members to end of life care - a cross-sectional study

BUZGOVA, Radka ; KOZAKOVA, Radka ; BAR, Michal ; STUTOVA, Monika ; RESSNER, Pavel ; BARTOVA, Petra
OMEGA JOURNAL OF DEATH AND DYING, 22/06/2020, Pagination inconnue

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The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers - a qualitative systematic review

FLEMMING, Kate ; TURNER, Victoria ; BOLSHER, Samantha ; HULME, Bill ; MCHUGH, Elizabeth ; WATT, Ian
PALLIATIVE MEDICINE, 14/04/2020, Pagination inconnue

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"A monster that lives in our lives" - experiences of caregivers of people with motor neuron disease and identifying avenues for support

HENNESSY ANDERSON, Nicole ; GLUYAS, Cathy ; MATHERS, Susan ; HUDSON, Peter ; UGALDE, Anna
BMJ supportive and palliative care, 12/2019, vol.9, n°4, Pagination inconnue

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Lived experience of spouses of persons with motor neuron disease - preliminary findings through interpretative phenomenological analysis

WARRIER, Manjusha G. ; SADASIVAN, Arun ; POLAVARAPU, Kiran ; KUMAR, Veeramani Preethish ; MAHAJAN, Niranjan Prakash ; REDDY, Chevula Pradeep Chandra ; VENGALIL, Seena ; NASHI, Saraswati ; NALINI, Atchayaram ; THOMAS, Priya Treesa
Indian journal of palliative care, 03/2020, vol.26, n°1, p. 60-65

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Chronicle of a death foretold - can studying death help us care for the living?

RIFKIN, Dena E.
Clinical journal of the American Society of Nephrology, 05/2020, vol.15, p. 1-3

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Hopelessness in palliative care for people with motor neurone disease - conceptual considerations

POPPE, Christopher
Nursing ethics, 02/2020, vol.27, n°1, p. 316-320

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Glycopyrrolate and the management of "death rattle" in patients with myasthenia gravis

HINDMARSH, Jonathan ; EVERETT, Paul ; HINDMARSH, Sharlene ; LEE, Mark A. ; PICKARD, Jonathan
JOURNAL OF PALLIATIVE MEDICINE, 23/01/2020, Pagination inconnue

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Digital legacies with people affected by motor neurone disease - the views, experiences and perceptions of healthcare professionals, specialists and experts for use with bereaved young people

CLABBURN, Oliver ; O'BRIEN, Mary ; KNIGHTING, Katherine ; JACK, Barbara
BEREAVEMENT CARE, été-hiver 2019, vol.38, n°2-3, p. 68-75

Papa est en bas

ADRIANSEN, Sophie
Nathan , 2018 , 118 p.

Selective neuronal death in neurodegenerative diseases - the ongoing mystery

SUBRAMANIAM, Srinivasa
The Yale journal of biology and medicine, 20/12/2019, vol.92, n°4, p. 695-705

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Palliative care in 9 children with neurodegeneration with brain iron accumulation

DANGEL, Tomasz ; KMIEC, Tomasz ; JANUSZANIEC, Artur ; WAZNY, Barbara
Neurological sciences, 22/11/2019, Pagination inconnue

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Palliative medicine and end-of-life care

GLOVER, Toni L. ; KLUGER, Benzi M.
Handbook of clinical neurology, 2019, vol.167, p. 545-561

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Vivre avec une maladie neuro-évolutive - enjeux éthiques et sociétaux

HIRSCH, Emmanuel ; BRUGERON, Pierre-Emmanuel ; CLANET, Michel
ERES , 10/2019 , 304 p.

Accompagnement jusqu’à la fin d’une enfant polyhandicapée ayant une maladie neurodégénérative dans un Institut d’Education Motrice (IEM)

RIBRAULT, Alice ; MAHOUIN, Sophie ; SINICKI, Catherine ; SALBANERA, Laurent ; PIERRE, Maryline ; BERNARD, Frédéric ; GREAUME, Florence ; BEVIS, Charlotte ; TAILLEBOIS, Lise
MEDECINE PALLIATIVE, 09/2019, vol.18, n°4-5, p. 259-262

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