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Questa sezione (a cura del dr. Paolo Franceschi) -
dedicata a tutti gli Operatori sanitari delle neuroscienze e non che si
occupano di SLA e di Cure palliative neurologiche - intende
facilitare, con segnalazioni periodiche di articoli scientifici e
abstract tratti dalla letteratura internazionale, chi ne fosse interessato per
il proprio aggiornamento professionale. Articoli
AGGIORNAMENTI DI LUGLIO 2010
Amyotrophic lateral sclerosis: current practice and future treatments. Bedlack RS. Curr Opin Neurol. 2010 Jul 5. [Epub ahead of print]PMID: 20613515 [PubMed - as supplied by publisher]Related citations
Levin J, Bötzel K, Giese A, Vogeser M, Lorenzl S. Dement Geriatr Cogn Disord. 2010 Jul 3;29(6):553-559. [Epub ahead of print]PMID: 20606437 [PubMed - as supplied by publisher]Related citations
Molecular aspects of cyclophilins mediating therapeutic actions of their ligands. Galat A, Bua J. Cell Mol Life Sci. 2010 Jul 4. [Epub ahead of print]PMID: 20602248 [PubMed - as supplied by publisher]Related citations
TDP-43: A DNA and RNA binding protein with roles in neurodegenerative diseases. Warraich ST, Yang S, NicholsonGA, Blair IP. Int J Biochem Cell Biol. 2010 Jun 25. [Epub ahead of print]PMID: 20601083 [PubMed - as supplied by publisher]Related citations
A surgical technique of spinal cord cell implantation in amyotrophic lateral sclerosis. Blanquer M, Pérez-Espejo MA, Martínez-Lage JF, Iniesta F, Martinez S, Moraleda JM. J Neurosci Methods. 2010 Jun 23. [Epub ahead of print]PMID: 20600320 [PubMed - as supplied by publisher]Related citations
Dupuis L, Echaniz-Laguna A.Curr Drug Targets. 2010 Jul 1. [Epub ahead of print]PMID: 20594176 [PubMed - as supplied by publisher]Related citations
Amyotrophic lateral sclerosis and assisted ventilation: how patients decide. Lemoignan J, Ells C. Palliat Support Care. 2010 Jun;8(2):207-13.PMID: 20557668 [PubMed - in process]Related citations Curr Opin Neurol. 2010 Jul 5. [Epub ahead of print]
Amyotrophic lateral sclerosis: current practice and future treatments. Neurology Section, Division of Neurology, Duke University, Durham Veterans Affairs Medical Center, Durham, North Carolina, USA
Abstract Palliat Support Care. 2010 Feb 18:1-8. [Epub ahead of print] Differences in quality of life modalities give rise to needs of individual support in patients with ALS and their next of kin. Olsson AG, Markhede I, Strang S, Persson LI. Department of Neurology, Institute of Clinical Neuroscience and Institute of Neuroscience and Physiology, Sahlgrenska University Hospital, Göteborg, Sweden. OBJECTIVE: The aim of this study was to examine health-related quality of life (HRQoL), individual QoL, anxiety and depression in patients with amyotrophic lateral sclerosis (ALS) and their next of kin in relation to patients' physical function over time.Methods:35 patients and their next of kin were studied using the Short Form-36 Health Survey (SF-36), Schedule for Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), and Hospital Anxiety and Depression Scale (HADS) and patients also by the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised and the Norris scale every fourth to sixth month, one to four times.Results:Changes were found over time in both patients and their next of kin in the SF-36 but not in the SEIQoL-DW or HADS. Patients rated worse than their next of kin in the SF-36 physical subscales and next of kin rated worse than the patients in the global QoL score in SEIQoL-DW. Health, hobbies, and total relations were important areas in the SEIQoL-DW among all participants, but some important areas also differed between the patients and their next of kin. In most important areas among the pairs, the next of kin estimated their functioning/satisfaction worse than patients estimated their functioning/satisfaction.Significance of results:There were few changes over time in the QoL among the participants. Although most of the estimates in patients and their next of kin were equal, there were also some differences. These results emphasize the importance of support for both patients and their next of kin and that support ought to be given on both individual bases and together in pairs. The SEIQoL-DW might give signposts in the care through the course of the disease about what should be focused on to increase satisfaction of the important areas of life and might help the person to find coping strategies to handle his or her life situation. PMID: 20163763 [PubMed - as supplied by publisher] Arch Phys Med Rehabil. 2010 Feb;91(2):268-272. Power Wheelchair Prescription, Utilization, Satisfaction, and Cost for Patients With Amyotrophic Lateral Sclerosis: Preliminary Data for Evidence-Based Guidelines. Ward AL, Sanjak M, Duffy K, Bravver E, Williams N, Nichols M, Brooks BR. Department of Neurology, Carolinas Medical Center, Charlotte, NC. Ward AL, Sanjak M, Duffy K, Bravver E, Williams N, Nichols M, Brooks BR. OBJECTIVES: To determine the features most frequently selected in a power wheelchair (PWC), level of satisfaction with the selections, and how often the PWC features are used by patients diagnosed with amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND). DESIGN: Internally generated questionnaire. SETTING: An ALS/Muscular Dystrophy Association center. PARTICIPANTS: Convenience sample of current patients (N=45) of our clinic with ALS/MND who are PWC users (men, n=27; women, n=18; age range, 27-85y). INTERVENTION: Self-administered survey. MAIN OUTCOME MEASURE: Thirty-two patients completed a 31-question survey investigating patients' patterns of selection, satisfaction, and frequency of PWC use; technical and psychometric influences; and other aspects of decision-making processes that patients experience before, during, and after acquiring a PWC. RESULTS: Ninety percent of respondents received their evaluations at a multidisciplinary ALS clinic, 1 via the Department of Veterans Affairs, and 1 was unknown. Sixty-six percent of patients thought the chair evaluation was timed correctly, and 19% wished they had started sooner. Forty-five percent of people were able to walk a few steps, and 55% were able to stand when their chairs arrived. When they first received the chair, 79% were satisfied with the overall comfort of the chair, and 86% were satisfied with the ease of use; currently, 69% are satisfied with the overall comfort, and 72% are satisfied with ease of use. There was a statistically significant difference in how patients used their wheelchair features initially and currently in terms of seat elevate and attendant control, but not tilt, recline, and elevating leg rests. The average cost for the power chairs was $26,404 (range, $19,376-$34,311), and the average cost a month is $917. Overall, 88% of respondents said they would get the same type of chair with the same features again, and 81% felt that the chair was a good value for the cost. CONCLUSIONS: We obtained first-hand knowledge from 32 patients with ALS/MND who are current PWC users on their use and satisfaction with their PWCs from initial to current use. Based on this survey, patients with ALS/MND seen for their wheelchair evaluation with experienced clinicians exhibit high use and satisfaction with their PWCs. Copyright © 2010 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved. PMID: 20159132 [PubMed - as supplied by publisher] Eur J Neurol. 2010 Feb 11. [Epub ahead of print] Prevalence of depression in amyotrophic lateral sclerosis and other motor disorders. Taylor L, Wicks P, Leigh PN, Goldstein LH. Department of Psychology, MRC Centre for Neurodegeneration Research, King's College London, Institute of Psychiatry, London, UK. Background: Research suggests the prevalence of severe depression in ALS is <20%. In contrast, studies have reported that severe depression affects 40-50% of patients with other neurodegenerative motor conditions (e.g. multiple sclerosis, Parkinson's disease and Huntington's disease). The comparison with such disorders has generated a clinical impression that patients with ALS have surprisingly low rates of depression. However, comparisons with such disorders do not take into account the markedly different pathological, physical and behavioural profiles associated with these disorders. To assess further the extent to which ALS is associated with a low prevalence of depression, we compared the prevalence of depression in patients with ALS to that in patients with neuromuscular disorders with more comparable disease profiles. Methods: The Beck Depression Inventory-II (BDI-II), the Major Depression Inventory (MDI), the Hospital Anxiety and Depression Scale (HADS) and the ALS Functional Rating Scale-Revised were sent to 212 patients from a tertiary referral Motor Nerve Clinic in London, UK. Results: Data were obtained from 51 people with ALS and 39 with other neuromuscular disorders. The non-ALS group included patients diagnosed with disorders that are characterized by motor neurone dysfunction and/or a decline in everyday function. Analyses revealed no between-group differences on severity and prevalence rates of depression according to the BDI-II, HADS Depression Subscale and MDI. Conclusions: Our findings do not support the impression that patients with ALS have lower rates of depression than patients with other varied neuromuscular disorders.
AGGIORNAMENTI DI LUGLIO 2010
PURPOSE OF REVIEW: Knowledge of amyotrophic lateral sclerosis, and in particular the care of patients with it, is evolving exponentially. More than 1700 articles with the phrase 'amyotrophic lateral sclerosis' have been published in the past 2 years; these form the basis for this timely review. RECENT FINDINGS: In part 1, I give an update on the care of patients with amyotrophic lateral sclerosis, including ways to speed diagnosis, optimal use of riluzole, multidisciplinary teams, mechanical ventilation, gastrostomy tubes, lipid-lowering agents and symptom management. Although care has become more evidence-based, there remain a number of quandaries; for these, I will provide suggestions based upon my own experience. In part 2, I identify some exciting new treatment options that are under study. These include agents designed for novel targets within motor neurons and nonneuronal cells, agents designed for specific amyotrophic lateral sclerosis subtypes and interesting new technologies. Finally, in part 3, I define current barriers to developing even better therapeutics and offer ways around them. SUMMARY: The care of patients with amyotrophic lateral sclerosis has evolved and is now more evidence-based than ever before. Exciting new therapies are currently being tested, which may revolutionize care even further. Barriers exist, but they are surmountable. PMID: 20613515 [PubMed - as supplied by publisher] Palliat Support Care. 2010 Jun;8(2):207-13. Sclerosi laterale amiotrofica: come i pazienti decidonoMontreal Neurological Hospital ALS Clinic, McGill University Health Center-Montreal, Neurological Hospital, 3801 University Ave., Montreal, Quebec, Canada. AbstractCONTESTO: durante l’intero corso della loro malattia, i malati di sclerosi laterale amiotrofica (SLA) devono prendere molte decisioni riguardo al trattamento; tuttavia, nessuna di esse ha un impatto così significativo sulla qualità della vita e sulla sopravvivenza quanto le decisioni sulla ventilazione assistita. OBIETTIVO: lo scopo di questo studio era di comprendere meglio l’esperienza di prendere una decisione circa la ventilazione assistita per pazienti con SLA. METODI: usando la metodologia della fenomenologia qualitativa, vennero condotte 10 interviste semi-strutturate con persone affette da SLA e con i loro caregivers per ottenere fattori che fossero pertinenti al loro processo decisionale riguardo alla ventilazione assistita. RISULTATI: dalle interviste emersero sei temi principali: (1)il significato dell’intervento – i partecipanti fecero una netta distinzione tra ventilazione non invasiva, che vedevano come un mezzo per alleviare I sintomi dell’insufficienza respiratoria, e la ventilazione invasiva, che invece giudicavano come un mezzo che assume il controllo del loro respiro e quindi salva loro la vita. Senza questo tipo di intervento sarebbero morti; (2)l’importanza del contesto – compresi lo stato funzionale, i supporti disponibili, e le implicazioni economiche; (3)l’importanza dei valori – riguardo a comunicazione, relazioni, autonomia, vita e qualità della vita; (4)gli effetti dei timori – in particolare il distress respiratorio, il soffocamento, la sensazione di restare senza aria, e lo stesso processo del morire; (5)il bisogno di informazioni – su quale sia l’impatto dell’uso della ventilazione assistita sulla vita quotidiana, su come avvenga la morte per insufficienza respiratoria, su come i caregiverse i malati di ALS si differenzino nel loro bisogno di informazioni e sui concetti erronei più comuni, e (6)adattamento a (o accettazione di) un intervento - un lungo processo che implica una graduale familiarizzazione con l’attrezzatura e con i suoi benefici. SIGNIFICATO DELLA RICERCA: i malati di SLA e i loro caregiversvalorizzano l’autonomia nel prendere decisioni riguardo alla ventilazione assistita. Questo processo non è né interamente razionale né interessato, e comprende fattori che gli operatori sanitari dovrebbero prevenire e verso i quali dovrebbero rivolgersi. Le discussioni sulla ventilazione assistita e relativa tempistica dovrebbero essere personalizzate ed eseguite periodicamente. PMID: 20557668 [PubMed - in process]
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SCOPRI I PROGETTI REALIZZATI DA AISLA NEI PRIMI 7 MESI DEL 2010   15.09.10 Si chiudono le iscrizioni al primo convegno AriSLA del 29 settembre 2010 CLICCA QUI PER MAGGIORI INFO DISPONIBILE LA NUOVA COLLANA "VIVERE CON LA SLA" CLICCA QUI X I DETTAGLI |
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