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    "textoCompleto" => "<span class="elsevierStyleSections"><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0035">Introduction</span><p id="par0005" class="elsevierStylePara elsevierViewall">Amyotrophic lateral sclerosis &#40;ALS&#41; is a degenerative neurological disorder that affects motor neurons&#44; causing progressive and irregular loss of muscle strength&#46; ALS progressively affects ventilatory pump with more or less significant bulbar involvement&#46; The course of the disease is highly variable&#44; and although lung function has prognostic value&#44;<a class="elsevierStyleCrossRef" href="#bib0005"><span class="elsevierStyleSup">1</span></a> it has no predictive value since the loss of respiratory muscle function can occur abruptly&#46;</p><p id="par0010" class="elsevierStylePara elsevierViewall">This disease entails a very significant burden for caregivers&#44;<a class="elsevierStyleCrossRef" href="#bib0010"><span class="elsevierStyleSup">2</span></a> both from the perspective of care and from the economic and emotional aspects&#46; In recent years there has been a change of attitude toward tackling the disease&#46; Initially the clinicians&#8217; position was more pessimistic about the treatment&#44; citing the poor short-term prognosis&#46; However&#44; the introduction of noninvasive ventilation&#44; percutaneous gastrostomy and mechanical aids for cough augmentation<a class="elsevierStyleCrossRef" href="#bib0015"><span class="elsevierStyleSup">3</span></a> improved the quality of life of patients and&#44; possibly&#44; even their survival&#46; One of the challenges facing most health systems is to respond to the needs of these complex patients in the final stages of life&#46;</p><p id="par0015" class="elsevierStylePara elsevierViewall">Previous studies have shown the main issues for patients and caregivers for coping with the disease&#44; especially during the end-of-life period&#58; overall&#44; ALS patients were aware of their prognosis and disease severity&#44; having been kept well informed by their doctors&#46; Caregivers reported control of symptoms in their relatives but the relief of the respiratory symptoms was not easily achieved despite the use of drugs and sedatives&#46; Family burden and hospitalization access were high&#46; Deaths were equally distributed between home and hospital&#44; and NIV use and diagnosis influenced familial reporting&#46;<a class="elsevierStyleCrossRef" href="#bib0020"><span class="elsevierStyleSup">4</span></a></p><p id="par0020" class="elsevierStylePara elsevierViewall">The aim of this study was to analyze the characteristics of ALS patients who die at home and in hospital and to study the degree of variability of clinical practice&#46; Moreover&#44; it aimed at identifying the elements that can improve care in the final stages of life in order to design care projects capable of responding to patients&#8217; real needs&#46;</p></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0040">Methods</span><p id="par0025" class="elsevierStylePara elsevierViewall">This retrospective study was conducted in five hospitals from the north of Italy and Catalonia &#40;Spain&#41; by analyzing medical records of ALS patients treated at the hospital and who died of the disease&#46; Four hospitals were public hospitals with beds dedicated to acute care and fifth was a private center &#40;Fondazione S&#46; Maugeri IRCCS&#41; involved in rehabilitation&#47;long-term needs and research for chronic diseases&#44; but in all cases patients do not have to pay any money at the time of care&#46;</p><p id="par0030" class="elsevierStylePara elsevierViewall">In 2010 all cases of patients diagnosed with ALS in every hospital who had died in the previous twelve months whether at the hospital or in a health care facility or at home were analyzed&#46;</p><p id="par0035" class="elsevierStylePara elsevierViewall">The variables considered in each patient were age &#40;years&#41; and gender &#40;male&#47;female&#41;&#44; time elapsed since the onset of symptoms &#40;months&#41; &#40;TEOS&#41;&#44; time elapsed since the beginning of ventilation &#40;months&#41; &#40;TEBV&#41;&#44; type of ventilation prescription &#40;elective&#47;acute&#41;&#44; characteristics of the ventilation in the last week of life &#40;pressure&#44; volumetric&#41;&#44; type of mask used &#40;nasal&#47;facial&#41;&#44; number of hours of ventilation in the last week &#40;measured according to the data of the medical record&#41;&#44; management of secretions &#40;use of cough assist&#44; bag or manual in the medical record&#41;&#44; presence of percutaneous endoscopic gastrostomy &#40;PEG&#41;&#44; and drug consumption &#40;morphine&#44; benzodiazepine&#44; other&#41;&#46; The definition of the type of ALS &#40;spinal&#47;bulbar&#41; was defined according to the clinical information&#44; with or without objective data&#46;</p><span id="sec0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0045">Statistical analysis</span><p id="par0040" class="elsevierStylePara elsevierViewall">Patient population was classified into two subgroups according the place of death&#58; home or hospital&#46; Statistical analysis was performed using SPSS 13&#46;2 software &#40;SPSS Inc&#46;&#44; Chicago&#44; IL&#44; USA&#41;&#46; A descriptive analysis of variables derived by medical record was performed &#40;expressed as &#37;&#41;&#46; Binary logistic regression was performed using &#8220;place of death&#8221; as dependent variable&#46; A two-sided <span class="elsevierStyleItalic">p</span>-value<span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;05 was considered to be statistically significant&#46;</p></span></span><span id="sec0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0050">Results</span><p id="par0045" class="elsevierStylePara elsevierViewall">The medical record of 77 patients &#40;women&#58; 44&#46;2&#37;&#44; mean age&#58; 66&#46;3<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>11&#46;9<span class="elsevierStyleHsp" style=""></span>yrs&#41; was analyzed&#46; There were no differences regarding age related to the place of death&#46;</p><span id="sec0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0055">Hospital distribution</span><p id="par0050" class="elsevierStylePara elsevierViewall">In all&#44; 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or type of ventilation prescription &#40;elective or acute&#41; &#40;<a class="elsevierStyleCrossRef" href="#tbl0010">Table 2</a>&#41;&#46;</p><elsevierMultimedia ident="tbl0010"></elsevierMultimedia><p id="par0060" class="elsevierStylePara elsevierViewall">Mean time elapsed since the onset of symptoms &#40;months&#41; &#40;TEOS&#41; was 35&#46;93<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>25&#46;89 months&#44; significantly shorter in patients who died in hospital &#40;29&#46;28<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>19&#46;69 months&#41; than at home &#40;41&#46;12<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>29&#46;04&#41; &#40;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>0&#46;044&#41;&#46;</p></span><span id="sec0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0065">Variables related to ventilation during the last week</span><p id="par0065" class="elsevierStylePara elsevierViewall">The variables related to ventilation during last week are shown in <a class="elsevierStyleCrossRef" href="#tbl0015">Table 3</a>&#46;</p><elsevierMultimedia ident="tbl0015"></elsevierMultimedia><p id="par0070" class="elsevierStylePara elsevierViewall">The place of death is significantly related to the characteristics of ventilation during the last week&#44; specifically related to the airway interface &#40;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>0&#46;029&#41;&#58; &#37; of patients with facial ventilation is higher in the hospital group &#40;11&#46;4&#37; vs 39&#46;4&#37;&#44; <span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;005&#41;&#44; and also to the type of ventilator&#58; the percentage of patients using volume ventilator is significantly higher among those who die at home &#40;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;036&#41;&#46;</p><p id="par0075" class="elsevierStylePara elsevierViewall">The percentage of patients who are ventilated by tracheotomy in the study group is 14&#37; &#40;17&#37; in patients with bulbar involvement and 9&#37; in patients without bulbar involvement&#41;&#46; There are no significant differences regarding the invasive access to the airway &#40;namely tracheo or not&#41; related to the place of death&#46;</p></span><span id="sec0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0070">Variables related to care during the last week</span><p id="par0080" class="elsevierStylePara elsevierViewall">There were no significant differences in drug consumption &#40;amitriptyline&#44; baclofen&#44; benzodiazepines&#44; lithium carbonate&#44; morphine or riluzole&#41; during the last week of life&#44; except in the case of omeprazole&#44; the use of which was significantly higher in hospital &#40;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;044&#41;&#46;</p><p id="par0085" class="elsevierStylePara elsevierViewall">There were no significant differences in access to devices or methods for managing secretions among patients who die in hospital or at home or in the use of PEG&#46;</p></span></span><span id="sec0045" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0075">Discussion</span><p id="par0090" class="elsevierStylePara elsevierViewall">In our retrospective study the place of death is significantly related to the hospital&#44; the time elapsed since the onset of symptoms and the type of airway access in the last week&#46;</p><p id="par0095" class="elsevierStylePara elsevierViewall">There are limitations to the interpretation of our findings&#44; especially in relation to the sample size and the number of hospitals studied&#46; However&#44; these preliminary data suggest that the organization of health care and some aspects of the disease may play a role&#46;</p><p id="par0100" class="elsevierStylePara elsevierViewall">We found significant differences in the percentage of patients who die at home according to the hospital&#46; The possibility of dying at home or not is related to a set of elements in which health resources&#44; physician attitudes and support resources in the community play a role in the decision-making process&#46;</p><p id="par0105" class="elsevierStylePara elsevierViewall">In France only 36&#37; of patients died outside medical facilities &#40;mainly at home&#41;&#46;<a class="elsevierStyleCrossRef" href="#bib0025"><span class="elsevierStyleSup">5</span></a> Most French patients die in acute hospitals and only 12&#37; out of the total die in hospices or long-term care facilities&#46;</p><p id="par0110" class="elsevierStylePara elsevierViewall">The variability within the same country is very high&#44; as we can see in the results of the three Italian hospitals&#46; In one region of Italy over 85&#37; of patients die at home&#46;<a class="elsevierStyleCrossRef" href="#bib0030"><span class="elsevierStyleSup">6</span></a> However&#44; these data should be interpreted with caution&#44; since in many cases they refer to hospital records and not to population analysis&#46; In order to understand the patients&#8217; preferences it might be interesting to analyze the role of reference centers&#46;</p><p id="par0115" class="elsevierStylePara elsevierViewall">It seems logical to think that a reference center improves outcomes because it focuses on the knowledge and skills needed to manage complex patients as in the case of ALS&#46; However&#44; the benefits are more related to the intensity of interventions than to the concentration of patients&#46; Zoccolella et al&#46;<a class="elsevierStyleCrossRef" href="#bib0035"><span class="elsevierStyleSup">7</span></a> showed that multidisciplinary clinics did not improve survival&#46; In this study the rate of interventions in both the groups &#40;multidisciplinary clinic and general neurology clinic&#41; was very low&#58; only 2&#46;5&#37; of patients used NIV in both groups and 6&#37; of patients in multidisciplinary clinic used PEG&#46;</p><p id="par0120" class="elsevierStylePara elsevierViewall">Another bias in the analysis of the benefits of reference centers is in recruitment&#46; Some evidence suggest that proactive and aggressive therapy improves survival&#46;<a class="elsevierStyleCrossRef" href="#bib0040"><span class="elsevierStyleSup">8</span></a> Hutchison et al&#46;<a class="elsevierStyleCrossRef" href="#bib0045"><span class="elsevierStyleSup">9</span></a> suggested that the ALS clinic treated a group of fitter ALS patients and the general neurologists saw all patients &#40;especially patients living further from ALS clinic&#44; more disabled or older&#41;&#46; Chi&#242; et al&#46;<a class="elsevierStyleCrossRef" href="#bib0050"><span class="elsevierStyleSup">10</span></a> confirm this approach&#46; Patients treated in specialized clinics are four years younger than those treated at non-specialized neurology clinics&#44; they receive more aggressive treatments &#40;PEG and NIV&#41;&#44; they have fewer hospital admissions&#44; and most of the hospital admissions are planned&#46;</p><p id="par0125" class="elsevierStylePara elsevierViewall">There are doubts about the benefits of a living will<a class="elsevierStyleCrossRef" href="#bib0055"><span class="elsevierStyleSup">11</span></a> to help physicians make clinical decisions at the end of life&#44; mainly with respect to the decision to perform a tracheotomy or for the patient to die at home or in hospital&#46; The most important factor is the doctor&#39;s communication skills&#46;</p><p id="par0130" class="elsevierStylePara elsevierViewall">A diverse but interrelated set of factors influence patient choices and attitudes about living and dying with ALS&#46; There are specific circumstances that change attitudes about death and the place of death&#46; In the Netherlands&#44; in 2000&#8211;2005 16&#46;8&#37; of ALS patients chose the option of euthanasia or physician-assisted suicide &#40;PAS&#41;&#44; and 14&#46;8&#37; died during continuous deep sedation &#40;CDS&#41;&#46;<a class="elsevierStyleCrossRef" href="#bib0060"><span class="elsevierStyleSup">12</span></a> This attitude is not uniform across countries&#44; and ethical issues emerge as a main element of care plan throughout the course of the disease&#46;<a class="elsevierStyleCrossRef" href="#bib0065"><span class="elsevierStyleSup">13</span></a> The increase in interventions in the end-of-life period is likely to increase admissions to hospitals or health care facilities&#46;</p><p id="par0135" class="elsevierStylePara elsevierViewall">The time elapsed since the onset of symptoms is an important prognostic factor&#46; As Kaufmann et al&#46;<a class="elsevierStyleCrossRef" href="#bib0070"><span class="elsevierStyleSup">14</span></a> showed&#44; symptom duration at baseline visit was a significant predictor of survival&#58; shorter duration means higher mortality&#46;</p><p id="par0140" class="elsevierStylePara elsevierViewall">The patients&#8217; preferences regarding treatment choices change over time&#46; Patients who found the interventions acceptable &#40;PEG&#44; NIV or tracheo&#41; for life-extending were more likely to be recently diagnosed&#46;<a class="elsevierStyleCrossRef" href="#bib0075"><span class="elsevierStyleSup">15</span></a> One possible explanation for the fact that patients who die in hospital had a shorter course of the disease could be a positive attitude toward more aggressive treatments&#46; In our study&#44; the disease course is a year longer in patients who die at home&#46; Another possible explanation could be that adaptation to a disease as serious as ALS takes time&#46;</p><p id="par0145" class="elsevierStylePara elsevierViewall">Over 60&#37; of patients using facial mask in the last week die in hospital&#46; A total face mask is a possible option for patients in acute respiratory failure with leaks or nose bridge skin problems&#46;<a class="elsevierStyleCrossRef" href="#bib0080"><span class="elsevierStyleSup">16</span></a> There are no objective reasons for the increased use of face mask ventilation in patients who die in the hospital&#46; But it seems clear that it is more difficult to care for patients with a facial mask compared with those who only need a nasal mask&#46;</p><p id="par0150" class="elsevierStylePara elsevierViewall">There is no specific reason for the greater chance of dying in hospital for the patients who use a face mask&#46; Perhaps these patients have worsened and do not want tracheotomy&#44; so the facial mask is an alternative&#44; or perhaps the use of a facial mask is an overload for the caregiver because with facial mask fluid intake and communication is much more difficult&#46;</p><p id="par0155" class="elsevierStylePara elsevierViewall">Tracheotomy does not prevent discharging severe ALS patients home&#46; Lo Coco et al&#46; showed that 92&#37; of ALS patients with tracheotomy could go back home&#44; with a median survival time of 37 months&#44;<a class="elsevierStyleCrossRef" href="#bib0085"><span class="elsevierStyleSup">17</span></a> and Vianello et al&#46;<a class="elsevierStyleCrossRef" href="#bib0090"><span class="elsevierStyleSup">18</span></a> showed that 87&#37; of patients die at home&#46; In our survey&#44; 80&#37; of patients with a tracheotomy die at home&#44; a similar percentage to that described by Lo Coco and Vianello&#46; Although it may seem paradoxical&#44; patients with tracheotomy might represent less of a burden for the caregiver in ensuring effective ventilation&#46; Suctioning is also easier through the tracheostomy&#46;</p><p id="par0160" class="elsevierStylePara elsevierViewall">In our study no differences were observed regarding the place of death in relation to the presence or absence of bulbar involvement&#46; Further studies are needed to examine the relationship between bulbar involvement and place of death in patients with ALS&#46; The percentage of patients who are ventilated by tracheotomy in the study group is 14&#37;&#46; This percentage is slightly higher in the group with bulbar involvement &#40;17&#37;&#41;&#46; Perhaps this small difference in favor of the tracheotomy minimizes the impact of bulbar involvement as a determinant of place of death&#46;</p><p id="par0165" class="elsevierStylePara elsevierViewall">The accessibility of drugs and devices for secretion management is the same for both the groups of patients&#46; This fact emphasizes that death at home does not mean undertreatment&#46;</p><p id="par0170" class="elsevierStylePara elsevierViewall">The analysis of the place of death in ALS should not be restricted to discussion of the hospital or at home&#46; As Servera et al&#46;<a class="elsevierStyleCrossRef" href="#bib0095"><span class="elsevierStyleSup">19</span></a> pointed out&#44; the care of patients with ALS should be evaluated comprehensively&#46; The therapy &#8220;package&#8221; should include devices or techniques for respiratory support or nutrition&#44; but the therapy &#8220;package&#8221; must also include the organization of care in the community and easy communication with expert teams&#46; Telemedicine<a class="elsevierStyleCrossRef" href="#bib0100"><span class="elsevierStyleSup">20</span></a> plays a crucial role in an integrated care model&#46; Hospice or health care facilities could be useful for patients dependent on a ventilator who lack family support&#46;<a class="elsevierStyleCrossRef" href="#bib0105"><span class="elsevierStyleSup">21</span></a></p><p id="par0175" class="elsevierStylePara elsevierViewall">It is very difficult to establish the criteria for the best place to meet the needs of the end-of-life stages in patients with ALS&#46; It is necessary to establish care plans to meet the needs of each patient&#44; according to the resources that are locally available&#46;</p></span><span id="sec0050" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0080">Ethical disclosures</span><span id="sec0055" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0085">Protection of human and animal subjects</span><p id="par0180" class="elsevierStylePara elsevierViewall">The authors declare that no experiments were performed on humans or animals for this study&#46;</p></span><span id="sec0060" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0090">Confidentiality of data</span><p id="par0185" class="elsevierStylePara elsevierViewall">The authors declare that no patient data appear in this article&#46;</p></span><span id="sec0065" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0095">Right to privacy and informed consent</span><p id="par0190" class="elsevierStylePara elsevierViewall">The authors declare that no patient data appear in this article&#46;</p></span></span><span id="sec0070" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0100">Conflicts of interest</span><p id="par0195" class="elsevierStylePara elsevierViewall">The authors have no conflicts of interest to declare&#46;</p></span></span>"
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    "fechaRecibido" => "2013-12-03"
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            0 => "Amyotrophic lateral sclerosis"
            1 => "Place of death"
            2 => "Hospital"
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            4 => "Tracheotomy"
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            1 => "Local do &#243;bito"
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            3 => "Ventila&#231;&#227;o mec&#226;nica caseira"
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        "titulo" => "Abstract"
        "resumen" => "<p id="spar0005" class="elsevierStyleSimplePara elsevierViewall">Amyotrophic lateral sclerosis &#40;ALS&#41; is a degenerative neurological disorder that affects motor neurons&#46; Involvement of respiratory muscles causes the failure of the ventilator pump with more or less significant bulbar troubles&#46; ALS course is highly variable but&#44; in most cases&#44; this disease entails a very significant burden for patients and caregivers&#44; especially in the end-of-life period&#46;</p><p id="spar0010" class="elsevierStyleSimplePara elsevierViewall">In order to analyze the characteristics of ALS patients who die at home &#40;DH&#41; and in hospital &#40;DHosp&#41; and to study the variability of clinical practice&#44; a retrospective medical records analysis was performed &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>77 from five hospitals&#41;&#46; Variables&#58; time elapsed since the onset of symptoms and the beginning of ventilation&#44; characteristics of ventilation &#40;device&#44; mask and hours&#47;day&#41;&#44; and support devices and procedures&#46;</p> <span class="elsevierStyleSectionTitle" id="sect0010">Results</span><p id="spar0015" class="elsevierStyleSimplePara elsevierViewall">In all&#44; 14&#37; of patients were ventilated by tracheotomy&#46; From the analysis&#44; 57&#37; of patients were of DH&#46; Mean time since the onset of symptoms was 35&#46;93<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>25&#46;89 months&#44; significantly shorter in patients who DHosp &#40;29&#46;28<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>19&#46;69 months&#41; than DH &#40;41&#46;12<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>29&#46;04&#41; &#40;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>0&#46;044&#41;&#46; The percentage of patients with facial ventilation is higher in DHosp &#40;11&#46;4&#37; vs 39&#46;4&#37;&#44; <span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;005&#41;&#46;</p><p id="spar0020" class="elsevierStyleSimplePara elsevierViewall">DH or not is related to a set of elements in which health resources&#44; physician attitudes and support resources in the community play a role in the decision-making process&#46; There is great variability between countries and between hospitals in the same country&#46; Given the variability of circumstances in each territory&#44; the place of death in ALS might not be the most important element&#59; more important are the conditions under which the process unfolds&#46;</p>"
      ]
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        "resumen" => "<p id="spar0025" class="elsevierStyleSimplePara elsevierViewall">A esclerose lateral amiotr&#243;fica &#40;ELA&#41; &#233; uma perturba&#231;&#227;o neurol&#243;gica degenerativa que afeta os neur&#243;nios motores&#46; O envolvimento dos m&#250;sculos respirat&#243;rios causa a falha da bomba ventilat&#243;ria&#44; com problemas bulbares mais ou menos significativos&#46; A evolu&#231;&#227;o da ELA &#233; bastante vari&#225;vel&#44; mas&#44; na maioria dos casos&#44; esta doen&#231;a implica um peso muito significativo para doentes e prestadores de cuidados&#44; em particular no per&#237;odo terminal&#46;</p><p id="spar0030" class="elsevierStyleSimplePara elsevierViewall">Para analisar as caracter&#237;sticas dos doentes com ELA que morrem em casa &#40;DH&#41; e no hospital &#40;DHosp&#41;&#44; para al&#233;m da avalia&#231;&#227;o da variabilidade das pr&#225;ticas cl&#237;nicas&#44; foi realizada uma an&#225;lise retrospetiva dos registos m&#233;dicos &#40;n&#61;77 de 5 hospitais&#41;&#46; Vari&#225;veis&#58; tempo decorrido desde o aparecimento dos sintomas e o in&#237;cio da ventila&#231;&#227;o&#44; caracter&#237;sticas da ventila&#231;&#227;o &#40;dispositivo&#44; m&#225;scara e horas&#47;dia&#41; e dispositivos e procedimentos de apoio&#46;</p> <span class="elsevierStyleSectionTitle" id="sect0020">Resultados</span><p id="spar0035" class="elsevierStyleSimplePara elsevierViewall">Catorze por cento dos doentes foram tratados por traqueotomia&#46; Cinquenta e sete por cento dos doentes morreu em casa &#40;DH&#41;&#46; O tempo m&#233;dio desde o aparecimento dos sintomas foi de 35&#44;93 &#177; 25&#44;89 meses&#44; significativamente inferior em doentes que morrem no hospital &#40;DHosp&#41; &#40;29&#44;28 &#177; 19&#44;69 meses&#41; comparativamente com os que morrem em casa &#40;DH&#41; &#40;41&#44;12 &#177; 29&#44;04&#41; &#40;p&#61;0&#44;044&#41;&#46; A percentagem de doentes com ventila&#231;&#227;o facial foi superior nos DHosp &#40;11&#44;4&#37; vs 39&#46;4&#37;&#44; p&#60;0&#44;005&#41;&#46;</p><p id="spar0040" class="elsevierStyleSimplePara elsevierViewall">DH ou n&#227;o&#44; est&#225; relacionado a um conjunto de factores em que os recursos de sa&#250;de&#44; as atitudes dos m&#233;dicos e o apoio na comunica&#231;&#227;o desempenham um papel importante na tomada de decis&#227;o&#46; Existe uma grande variabilidade entre pa&#237;ses e entre hospitais no mesmo pa&#237;s&#46; Dada a variabilidade de circunst&#226;ncias em cada territ&#243;rio&#44; o local do &#243;bito na ELA poder&#225; n&#227;o ser o elemento mais importante&#44; sendo provavelmente mais relevantes as condi&#231;&#245;es em que o processo se desenrola&#46;</p>"
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                  \t\t\t\t" style="border-bottom: 2px solid black">Total&#44; <span class="elsevierStyleItalic">n</span> &#40;&#37;&#41;<a class="elsevierStyleCrossRef" href="#tblfn0005"><span class="elsevierStyleSup">&#42;</span></a>&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t"><span class="elsevierStyleItalic">Hospital</span></td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Fondazione S&#46; Maugeri IRCCS&#44; Lumezzane&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">24 &#40;31&#46;2&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">9 &#40;20&#46;5&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">15 &#40;45&#46;5&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">37&#46;5&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Ospedale Civile&#44; Padova&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">16 &#40;20&#46;8&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">13 &#40;29&#46;4&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">3 &#40;9&#46;1&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">81&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Azienda Ospedaliero-Universitaria Pisana&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">12 &#40;15&#46;6&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">9 &#40;20&#46;5&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">3 &#40;9&#46;1&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">75&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Hospital Universitari de Bellvitge&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">16 &#40;20&#46;8&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">9 &#40;20&#46;5&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">7 &#40;21&#46;2&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">56&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Hospital del Mar&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">9 &#40;11&#46;7&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">4 &#40;9&#46;1&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">5 &#40;15&#46;2&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">44&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
                  """
              ]
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                0 => "xTab523474.png"
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            0 => array:3 [
              "identificador" => "tblfn0005"
              "etiqueta" => "&#42;"
              "nota" => "<p class="elsevierStyleNotepara" id="npar0005">&#37; related to the total number of patients&#46;</p>"
            ]
          ]
        ]
        "descripcion" => array:1 [
          "en" => "<p id="spar0045" class="elsevierStyleSimplePara elsevierViewall">Hospital distribution&#46;</p>"
        ]
      ]
      1 => array:7 [
        "identificador" => "tbl0010"
        "etiqueta" => "Table 2"
        "tipo" => "MULTIMEDIATABLA"
        "mostrarFloat" => true
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          "leyenda" => "<p id="spar0060" class="elsevierStyleSimplePara elsevierViewall">Gender&#58; <span class="elsevierStyleItalic">p</span> value<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>0&#46;186&#46;</p><p id="spar0065" class="elsevierStyleSimplePara elsevierViewall">ALS onset&#58; <span class="elsevierStyleItalic">p</span> value<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>0&#46;357&#46;</p><p id="spar0070" class="elsevierStyleSimplePara elsevierViewall">Initiation of ventilation&#58; <span class="elsevierStyleItalic">p</span> value<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>0&#46;95&#46;</p>"
          "tablatextoimagen" => array:1 [
            0 => array:2 [
              "tabla" => array:1 [
                0 => """
                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><thead title="thead"><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-head\n
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                  \t\t\t\t\ttop\n
                  \t\t\t\t" style="border-bottom: 2px solid black">&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t" style="border-bottom: 2px solid black">Total&#44; <span class="elsevierStyleItalic">n</span> &#40;&#37;&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t" style="border-bottom: 2px solid black">Home&#44; <span class="elsevierStyleItalic">n</span> &#40;&#37;&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttop\n
                  \t\t\t\t" style="border-bottom: 2px solid black">Hospital&#44; <span class="elsevierStyleItalic">n</span> &#40;&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></thead><tbody title="tbody"><tr title="table-row"><td class="td" title="\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Male&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t  " align="char" valign="\n
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                  \t\t\t\t">43 &#40;55&#46;8&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t">27 &#40;61&#46;4&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t">16 &#40;48&#46;5&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n
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                  \t\t\t\t  " align="left" valign="\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Female&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">34 &#40;44&#46;2&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">17 &#40;38&#46;6&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">17 &#40;51&#46;5&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " colspan="4" align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="\n
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                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Bulbar&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">46 &#40;59&#46;7&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">25 &#40;56&#46;8&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">21 &#40;63&#46;6&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
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                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Spinal&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
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                  \t\t\t\t">31 &#40;40&#46;3&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t">19 &#40;43&#46;2&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">12 &#40;36&#46;4&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
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                  \t\t\t\t\ttop\n
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                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleItalic">Initiation of ventilation</span></td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Elective&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">57 &#40;78&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">33 &#40;78&#46;6&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">24 &#40;77&#46;4&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Acute phase&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
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                  \t\t\t\t">16 &#40;22&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">9 &#40;21&#46;4&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">7 &#40;22&#46;6&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
                  """
              ]
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                0 => "xTab523473.png"
              ]
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        ]
        "descripcion" => array:1 [
          "en" => "<p id="spar0055" class="elsevierStyleSimplePara elsevierViewall">Patient characteristics and onset of the disease&#46;</p>"
        ]
      ]
      2 => array:7 [
        "identificador" => "tbl0015"
        "etiqueta" => "Table 3"
        "tipo" => "MULTIMEDIATABLA"
        "mostrarFloat" => true
        "mostrarDisplay" => false
        "tabla" => array:2 [
          "leyenda" => "<p id="spar0080" class="elsevierStyleSimplePara elsevierViewall">Ventilation in the last week <span class="elsevierStyleItalic">p</span> value<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>0&#46;029&#46;</p><p id="spar0085" class="elsevierStyleSimplePara elsevierViewall">Number of hours <span class="elsevierStyleItalic">p</span> value<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>0&#46;43&#46;</p><p id="spar0090" class="elsevierStyleSimplePara elsevierViewall">Characteristics of ventilator <span class="elsevierStyleItalic">p</span> value<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>0&#46;036&#46;</p>"
          "tablatextoimagen" => array:1 [
            0 => array:2 [
              "tabla" => array:1 [
                0 => """
                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
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                  \t\t\t\t\ttop\n
                  \t\t\t\t" style="border-bottom: 2px solid black">Home&#44; <span class="elsevierStyleItalic">n</span> &#40;&#37;&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t" style="border-bottom: 2px solid black">Hospital&#44; <span class="elsevierStyleItalic">n</span> &#40;&#37;&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttop\n
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                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
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                  \t\t\t\t\ttable-entry\n
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                  \t\t\t\t">24 &#40;54&#46;5&#37;&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
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                  \t\t\t\t\ttop\n
                  \t\t\t\t">13 &#40;39&#46;4&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Tracheal ventilation&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">11 &#40;14&#46;3&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t">9 &#40;20&#46;5&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
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                  \t\t\t\t\ttop\n
                  \t\t\t\t">2 &#40;6&#46;1&#37;&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
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                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Facial ventilation&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t  " align="char" valign="\n
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                  \t\t\t\t\ttop\n
                  \t\t\t\t">13 &#40;39&#46;4&#37;&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
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                  \t\t\t\t">2 &#40;6&#46;1&#37;&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Other&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttop\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>VOLUME&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t  " align="left" valign="\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>PRESSURE&nbsp;\t\t\t\t\t\t\n
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                  """
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          "en" => "<p id="spar0075" class="elsevierStyleSimplePara elsevierViewall">Variables related to ventilation&#46;</p>"
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                    0 => array:2 [
                      "titulo" => "Amyotrophic lateral sclerosis&#58; early predictors of prolonged survival"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:3 [
                            0 => "A&#46; Czaplinski"
                            1 => "A&#46;A&#46; Yen"
                            2 => "S&#46;H&#46; Appel"
                          ]
                        ]
                      ]
                    ]
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                    0 => array:2 [
                      "doi" => "10.1007/s00415-006-0226-8"
                      "Revista" => array:6 [
                        "tituloSerie" => "J Neurol"
                        "fecha" => "2006"
                        "volumen" => "253"
                        "paginaInicial" => "1428"
                        "paginaFinal" => "1436"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/16773270"
                            "web" => "Medline"
                          ]
                        ]
                      ]
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            1 => array:3 [
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Original article
Place of death in patients with amyotrophic lateral sclerosis
Local do óbito em doentes com esclerose lateral amiotrófica
J. Escarrabilla,b,c,
Corresponding author
, A. Vianellod, E. Farreroe, N. Ambrosinof, J. Martínez Llorensg, M. Vitaccah
a Chronic Care Program, Hospital Clínic, Barcelona, Spain
b Master Plan for Respiratory Diseases, Department of Health, Barcelona, Spain
c REDISSEC, Research Network in Chronic Care, Spain
d Unità di Fisiopatologia e Terapia Intensiva Respiratoria, Ospedale Civile, Padova, Italy
e Chest Division, Hospital Universitari de Bellvitge, L’Hospitalet, Spain
f Unità Pneumologica, Dipartimento Cardio-Toracico, Azienda Ospedaliero-Universitaria Pisana, Pisa, Italy
g Chest Division, Hospital del Mar, Barcelona, Spain
h Divisione di Pneumologia Fondazione S. Maugeri IRCCS, Lumezzane, Italy
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In recent years there has been a change of attitude toward tackling the disease&#46; Initially the clinicians&#8217; position was more pessimistic about the treatment&#44; citing the poor short-term prognosis&#46; However&#44; the introduction of noninvasive ventilation&#44; percutaneous gastrostomy and mechanical aids for cough augmentation<a class="elsevierStyleCrossRef" href="#bib0015"><span class="elsevierStyleSup">3</span></a> improved the quality of life of patients and&#44; possibly&#44; even their survival&#46; One of the challenges facing most health systems is to respond to the needs of these complex patients in the final stages of life&#46;</p><p id="par0015" class="elsevierStylePara elsevierViewall">Previous studies have shown the main issues for patients and caregivers for coping with the disease&#44; especially during the end-of-life period&#58; overall&#44; ALS patients were aware of their prognosis and disease severity&#44; having been kept well informed by their doctors&#46; Caregivers reported control of symptoms in their relatives but the relief of the respiratory symptoms was not easily achieved despite the use of drugs and sedatives&#46; Family burden and hospitalization access were high&#46; Deaths were equally distributed between home and hospital&#44; and NIV use and diagnosis influenced familial reporting&#46;<a class="elsevierStyleCrossRef" href="#bib0020"><span class="elsevierStyleSup">4</span></a></p><p id="par0020" class="elsevierStylePara elsevierViewall">The aim of this study was to analyze the characteristics of ALS patients who die at home and in hospital and to study the degree of variability of clinical practice&#46; Moreover&#44; it aimed at identifying the elements that can improve care in the final stages of life in order to design care projects capable of responding to patients&#8217; real needs&#46;</p></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0040">Methods</span><p id="par0025" class="elsevierStylePara elsevierViewall">This retrospective study was conducted in five hospitals from the north of Italy and Catalonia &#40;Spain&#41; by analyzing medical records of ALS patients treated at the hospital and who died of the disease&#46; Four hospitals were public hospitals with beds dedicated to acute care and fifth was a private center &#40;Fondazione S&#46; Maugeri IRCCS&#41; involved in rehabilitation&#47;long-term needs and research for chronic diseases&#44; but in all cases patients do not have to pay any money at the time of care&#46;</p><p id="par0030" class="elsevierStylePara elsevierViewall">In 2010 all cases of patients diagnosed with ALS in every hospital who had died in the previous twelve months whether at the hospital or in a health care facility or at home were analyzed&#46;</p><p id="par0035" class="elsevierStylePara elsevierViewall">The variables considered in each patient were age &#40;years&#41; and gender &#40;male&#47;female&#41;&#44; time elapsed since the onset of symptoms &#40;months&#41; &#40;TEOS&#41;&#44; time elapsed since the beginning of ventilation &#40;months&#41; &#40;TEBV&#41;&#44; type of ventilation prescription &#40;elective&#47;acute&#41;&#44; characteristics of the ventilation in the last week of life &#40;pressure&#44; volumetric&#41;&#44; type of mask used &#40;nasal&#47;facial&#41;&#44; number of hours of ventilation in the last week &#40;measured according to the data of the medical record&#41;&#44; management of secretions &#40;use of cough assist&#44; bag or manual in the medical record&#41;&#44; presence of percutaneous endoscopic gastrostomy &#40;PEG&#41;&#44; and drug consumption &#40;morphine&#44; benzodiazepine&#44; other&#41;&#46; The definition of the type of ALS &#40;spinal&#47;bulbar&#41; was defined according to the clinical information&#44; with or without objective data&#46;</p><span id="sec0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0045">Statistical analysis</span><p id="par0040" class="elsevierStylePara elsevierViewall">Patient population was classified into two subgroups according the place of death&#58; home or hospital&#46; Statistical analysis was performed using SPSS 13&#46;2 software &#40;SPSS Inc&#46;&#44; Chicago&#44; IL&#44; USA&#41;&#46; A descriptive analysis of variables derived by medical record was performed &#40;expressed as &#37;&#41;&#46; Binary logistic regression was performed using &#8220;place of death&#8221; as dependent variable&#46; A two-sided <span class="elsevierStyleItalic">p</span>-value<span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;05 was considered to be statistically significant&#46;</p></span></span><span id="sec0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0050">Results</span><p id="par0045" class="elsevierStylePara elsevierViewall">The medical record of 77 patients &#40;women&#58; 44&#46;2&#37;&#44; mean age&#58; 66&#46;3<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>11&#46;9<span class="elsevierStyleHsp" style=""></span>yrs&#41; was analyzed&#46; There were no differences regarding age related to the place of death&#46;</p><span id="sec0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0055">Hospital distribution</span><p id="par0050" class="elsevierStylePara elsevierViewall">In all&#44; 57&#37; of patients died at home&#46; The probability of dying at home is significantly related to the hospital where the patient is cared for&#46; The percentage of patients who died in hospital ranged from 18&#46;7&#37; to 62&#46;5&#37; &#40;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>0&#46;045&#41;&#46; <a class="elsevierStyleCrossRef" href="#tbl0005">Table 1</a> shows the distribution of the five hospitals of the patients according to the place of death&#46;</p><elsevierMultimedia ident="tbl0005"></elsevierMultimedia></span><span id="sec0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0060">Variables related to the patient and the onset of the disease</span><p id="par0055" class="elsevierStylePara elsevierViewall">There are no differences regarding age&#44; gender&#44; characteristics of the onset of the disease &#40;bulbar or spinal&#41; or type of ventilation prescription &#40;elective or acute&#41; &#40;<a class="elsevierStyleCrossRef" href="#tbl0010">Table 2</a>&#41;&#46;</p><elsevierMultimedia ident="tbl0010"></elsevierMultimedia><p id="par0060" class="elsevierStylePara elsevierViewall">Mean time elapsed since the onset of symptoms &#40;months&#41; &#40;TEOS&#41; was 35&#46;93<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>25&#46;89 months&#44; significantly shorter in patients who died in hospital &#40;29&#46;28<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>19&#46;69 months&#41; than at home &#40;41&#46;12<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>29&#46;04&#41; &#40;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>0&#46;044&#41;&#46;</p></span><span id="sec0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0065">Variables related to ventilation during the last week</span><p id="par0065" class="elsevierStylePara elsevierViewall">The variables related to ventilation during last week are shown in <a class="elsevierStyleCrossRef" href="#tbl0015">Table 3</a>&#46;</p><elsevierMultimedia ident="tbl0015"></elsevierMultimedia><p id="par0070" class="elsevierStylePara elsevierViewall">The place of death is significantly related to the characteristics of ventilation during the last week&#44; specifically related to the airway interface &#40;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>0&#46;029&#41;&#58; &#37; of patients with facial ventilation is higher in the hospital group &#40;11&#46;4&#37; vs 39&#46;4&#37;&#44; <span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;005&#41;&#44; and also to the type of ventilator&#58; the percentage of patients using volume ventilator is significantly higher among those who die at home &#40;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;036&#41;&#46;</p><p id="par0075" class="elsevierStylePara elsevierViewall">The percentage of patients who are ventilated by tracheotomy in the study group is 14&#37; &#40;17&#37; in patients with bulbar involvement and 9&#37; in patients without bulbar involvement&#41;&#46; There are no significant differences regarding the invasive access to the airway &#40;namely tracheo or not&#41; related to the place of death&#46;</p></span><span id="sec0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0070">Variables related to care during the last week</span><p id="par0080" class="elsevierStylePara elsevierViewall">There were no significant differences in drug consumption &#40;amitriptyline&#44; baclofen&#44; benzodiazepines&#44; lithium carbonate&#44; morphine or riluzole&#41; during the last week of life&#44; except in the case of omeprazole&#44; the use of which was significantly higher in hospital &#40;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;044&#41;&#46;</p><p id="par0085" class="elsevierStylePara elsevierViewall">There were no significant differences in access to devices or methods for managing secretions among patients who die in hospital or at home or in the use of PEG&#46;</p></span></span><span id="sec0045" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0075">Discussion</span><p id="par0090" class="elsevierStylePara elsevierViewall">In our retrospective study the place of death is significantly related to the hospital&#44; the time elapsed since the onset of symptoms and the type of airway access in the last week&#46;</p><p id="par0095" class="elsevierStylePara elsevierViewall">There are limitations to the interpretation of our findings&#44; especially in relation to the sample size and the number of hospitals studied&#46; However&#44; these preliminary data suggest that the organization of health care and some aspects of the disease may play a role&#46;</p><p id="par0100" class="elsevierStylePara elsevierViewall">We found significant differences in the percentage of patients who die at home according to the hospital&#46; The possibility of dying at home or not is related to a set of elements in which health resources&#44; physician attitudes and support resources in the community play a role in the decision-making process&#46;</p><p id="par0105" class="elsevierStylePara elsevierViewall">In France only 36&#37; of patients died outside medical facilities &#40;mainly at home&#41;&#46;<a class="elsevierStyleCrossRef" href="#bib0025"><span class="elsevierStyleSup">5</span></a> Most French patients die in acute hospitals and only 12&#37; out of the total die in hospices or long-term care facilities&#46;</p><p id="par0110" class="elsevierStylePara elsevierViewall">The variability within the same country is very high&#44; as we can see in the results of the three Italian hospitals&#46; In one region of Italy over 85&#37; of patients die at home&#46;<a class="elsevierStyleCrossRef" href="#bib0030"><span class="elsevierStyleSup">6</span></a> However&#44; these data should be interpreted with caution&#44; since in many cases they refer to hospital records and not to population analysis&#46; In order to understand the patients&#8217; preferences it might be interesting to analyze the role of reference centers&#46;</p><p id="par0115" class="elsevierStylePara elsevierViewall">It seems logical to think that a reference center improves outcomes because it focuses on the knowledge and skills needed to manage complex patients as in the case of ALS&#46; However&#44; the benefits are more related to the intensity of interventions than to the concentration of patients&#46; Zoccolella et al&#46;<a class="elsevierStyleCrossRef" href="#bib0035"><span class="elsevierStyleSup">7</span></a> showed that multidisciplinary clinics did not improve survival&#46; In this study the rate of interventions in both the groups &#40;multidisciplinary clinic and general neurology clinic&#41; was very low&#58; only 2&#46;5&#37; of patients used NIV in both groups and 6&#37; of patients in multidisciplinary clinic used PEG&#46;</p><p id="par0120" class="elsevierStylePara elsevierViewall">Another bias in the analysis of the benefits of reference centers is in recruitment&#46; Some evidence suggest that proactive and aggressive therapy improves survival&#46;<a class="elsevierStyleCrossRef" href="#bib0040"><span class="elsevierStyleSup">8</span></a> Hutchison et al&#46;<a class="elsevierStyleCrossRef" href="#bib0045"><span class="elsevierStyleSup">9</span></a> suggested that the ALS clinic treated a group of fitter ALS patients and the general neurologists saw all patients &#40;especially patients living further from ALS clinic&#44; more disabled or older&#41;&#46; Chi&#242; et al&#46;<a class="elsevierStyleCrossRef" href="#bib0050"><span class="elsevierStyleSup">10</span></a> confirm this approach&#46; Patients treated in specialized clinics are four years younger than those treated at non-specialized neurology clinics&#44; they receive more aggressive treatments &#40;PEG and NIV&#41;&#44; they have fewer hospital admissions&#44; and most of the hospital admissions are planned&#46;</p><p id="par0125" class="elsevierStylePara elsevierViewall">There are doubts about the benefits of a living will<a class="elsevierStyleCrossRef" href="#bib0055"><span class="elsevierStyleSup">11</span></a> to help physicians make clinical decisions at the end of life&#44; mainly with respect to the decision to perform a tracheotomy or for the patient to die at home or in hospital&#46; The most important factor is the doctor&#39;s communication skills&#46;</p><p id="par0130" class="elsevierStylePara elsevierViewall">A diverse but interrelated set of factors influence patient choices and attitudes about living and dying with ALS&#46; There are specific circumstances that change attitudes about death and the place of death&#46; In the Netherlands&#44; in 2000&#8211;2005 16&#46;8&#37; of ALS patients chose the option of euthanasia or physician-assisted suicide &#40;PAS&#41;&#44; and 14&#46;8&#37; died during continuous deep sedation &#40;CDS&#41;&#46;<a class="elsevierStyleCrossRef" href="#bib0060"><span class="elsevierStyleSup">12</span></a> This attitude is not uniform across countries&#44; and ethical issues emerge as a main element of care plan throughout the course of the disease&#46;<a class="elsevierStyleCrossRef" href="#bib0065"><span class="elsevierStyleSup">13</span></a> The increase in interventions in the end-of-life period is likely to increase admissions to hospitals or health care facilities&#46;</p><p id="par0135" class="elsevierStylePara elsevierViewall">The time elapsed since the onset of symptoms is an important prognostic factor&#46; As Kaufmann et al&#46;<a class="elsevierStyleCrossRef" href="#bib0070"><span class="elsevierStyleSup">14</span></a> showed&#44; symptom duration at baseline visit was a significant predictor of survival&#58; shorter duration means higher mortality&#46;</p><p id="par0140" class="elsevierStylePara elsevierViewall">The patients&#8217; preferences regarding treatment choices change over time&#46; Patients who found the interventions acceptable &#40;PEG&#44; NIV or tracheo&#41; for life-extending were more likely to be recently diagnosed&#46;<a class="elsevierStyleCrossRef" href="#bib0075"><span class="elsevierStyleSup">15</span></a> One possible explanation for the fact that patients who die in hospital had a shorter course of the disease could be a positive attitude toward more aggressive treatments&#46; In our study&#44; the disease course is a year longer in patients who die at home&#46; Another possible explanation could be that adaptation to a disease as serious as ALS takes time&#46;</p><p id="par0145" class="elsevierStylePara elsevierViewall">Over 60&#37; of patients using facial mask in the last week die in hospital&#46; A total face mask is a possible option for patients in acute respiratory failure with leaks or nose bridge skin problems&#46;<a class="elsevierStyleCrossRef" href="#bib0080"><span class="elsevierStyleSup">16</span></a> There are no objective reasons for the increased use of face mask ventilation in patients who die in the hospital&#46; But it seems clear that it is more difficult to care for patients with a facial mask compared with those who only need a nasal mask&#46;</p><p id="par0150" class="elsevierStylePara elsevierViewall">There is no specific reason for the greater chance of dying in hospital for the patients who use a face mask&#46; Perhaps these patients have worsened and do not want tracheotomy&#44; so the facial mask is an alternative&#44; or perhaps the use of a facial mask is an overload for the caregiver because with facial mask fluid intake and communication is much more difficult&#46;</p><p id="par0155" class="elsevierStylePara elsevierViewall">Tracheotomy does not prevent discharging severe ALS patients home&#46; Lo Coco et al&#46; showed that 92&#37; of ALS patients with tracheotomy could go back home&#44; with a median survival time of 37 months&#44;<a class="elsevierStyleCrossRef" href="#bib0085"><span class="elsevierStyleSup">17</span></a> and Vianello et al&#46;<a class="elsevierStyleCrossRef" href="#bib0090"><span class="elsevierStyleSup">18</span></a> showed that 87&#37; of patients die at home&#46; In our survey&#44; 80&#37; of patients with a tracheotomy die at home&#44; a similar percentage to that described by Lo Coco and Vianello&#46; Although it may seem paradoxical&#44; patients with tracheotomy might represent less of a burden for the caregiver in ensuring effective ventilation&#46; Suctioning is also easier through the tracheostomy&#46;</p><p id="par0160" class="elsevierStylePara elsevierViewall">In our study no differences were observed regarding the place of death in relation to the presence or absence of bulbar involvement&#46; Further studies are needed to examine the relationship between bulbar involvement and place of death in patients with ALS&#46; The percentage of patients who are ventilated by tracheotomy in the study group is 14&#37;&#46; This percentage is slightly higher in the group with bulbar involvement &#40;17&#37;&#41;&#46; Perhaps this small difference in favor of the tracheotomy minimizes the impact of bulbar involvement as a determinant of place of death&#46;</p><p id="par0165" class="elsevierStylePara elsevierViewall">The accessibility of drugs and devices for secretion management is the same for both the groups of patients&#46; This fact emphasizes that death at home does not mean undertreatment&#46;</p><p id="par0170" class="elsevierStylePara elsevierViewall">The analysis of the place of death in ALS should not be restricted to discussion of the hospital or at home&#46; As Servera et al&#46;<a class="elsevierStyleCrossRef" href="#bib0095"><span class="elsevierStyleSup">19</span></a> pointed out&#44; the care of patients with ALS should be evaluated comprehensively&#46; The therapy &#8220;package&#8221; should include devices or techniques for respiratory support or nutrition&#44; but the therapy &#8220;package&#8221; must also include the organization of care in the community and easy communication with expert teams&#46; Telemedicine<a class="elsevierStyleCrossRef" href="#bib0100"><span class="elsevierStyleSup">20</span></a> plays a crucial role in an integrated care model&#46; Hospice or health care facilities could be useful for patients dependent on a ventilator who lack family support&#46;<a class="elsevierStyleCrossRef" href="#bib0105"><span class="elsevierStyleSup">21</span></a></p><p id="par0175" class="elsevierStylePara elsevierViewall">It is very difficult to establish the criteria for the best place to meet the needs of the end-of-life stages in patients with ALS&#46; It is necessary to establish care plans to meet the needs of each patient&#44; according to the resources that are locally available&#46;</p></span><span id="sec0050" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0080">Ethical disclosures</span><span id="sec0055" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0085">Protection of human and animal subjects</span><p id="par0180" class="elsevierStylePara elsevierViewall">The authors declare that no experiments were performed on humans or animals for this study&#46;</p></span><span id="sec0060" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0090">Confidentiality of data</span><p id="par0185" class="elsevierStylePara elsevierViewall">The authors declare that no patient data appear in this article&#46;</p></span><span id="sec0065" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0095">Right to privacy and informed consent</span><p id="par0190" class="elsevierStylePara elsevierViewall">The authors declare that no patient data appear in this article&#46;</p></span></span><span id="sec0070" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0100">Conflicts of interest</span><p id="par0195" class="elsevierStylePara elsevierViewall">The authors have no conflicts of interest to declare&#46;</p></span></span>"
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        "resumen" => "<p id="spar0005" class="elsevierStyleSimplePara elsevierViewall">Amyotrophic lateral sclerosis &#40;ALS&#41; is a degenerative neurological disorder that affects motor neurons&#46; Involvement of respiratory muscles causes the failure of the ventilator pump with more or less significant bulbar troubles&#46; ALS course is highly variable but&#44; in most cases&#44; this disease entails a very significant burden for patients and caregivers&#44; especially in the end-of-life period&#46;</p><p id="spar0010" class="elsevierStyleSimplePara elsevierViewall">In order to analyze the characteristics of ALS patients who die at home &#40;DH&#41; and in hospital &#40;DHosp&#41; and to study the variability of clinical practice&#44; a retrospective medical records analysis was performed &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>77 from five hospitals&#41;&#46; Variables&#58; time elapsed since the onset of symptoms and the beginning of ventilation&#44; characteristics of ventilation &#40;device&#44; mask and hours&#47;day&#41;&#44; and support devices and procedures&#46;</p> <span class="elsevierStyleSectionTitle" id="sect0010">Results</span><p id="spar0015" class="elsevierStyleSimplePara elsevierViewall">In all&#44; 14&#37; of patients were ventilated by tracheotomy&#46; From the analysis&#44; 57&#37; of patients were of DH&#46; Mean time since the onset of symptoms was 35&#46;93<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>25&#46;89 months&#44; significantly shorter in patients who DHosp &#40;29&#46;28<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>19&#46;69 months&#41; than DH &#40;41&#46;12<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>29&#46;04&#41; &#40;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>0&#46;044&#41;&#46; The percentage of patients with facial ventilation is higher in DHosp &#40;11&#46;4&#37; vs 39&#46;4&#37;&#44; <span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;005&#41;&#46;</p><p id="spar0020" class="elsevierStyleSimplePara elsevierViewall">DH or not is related to a set of elements in which health resources&#44; physician attitudes and support resources in the community play a role in the decision-making process&#46; There is great variability between countries and between hospitals in the same country&#46; Given the variability of circumstances in each territory&#44; the place of death in ALS might not be the most important element&#59; more important are the conditions under which the process unfolds&#46;</p>"
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      "pt" => array:2 [
        "titulo" => "Resumo"
        "resumen" => "<p id="spar0025" class="elsevierStyleSimplePara elsevierViewall">A esclerose lateral amiotr&#243;fica &#40;ELA&#41; &#233; uma perturba&#231;&#227;o neurol&#243;gica degenerativa que afeta os neur&#243;nios motores&#46; O envolvimento dos m&#250;sculos respirat&#243;rios causa a falha da bomba ventilat&#243;ria&#44; com problemas bulbares mais ou menos significativos&#46; A evolu&#231;&#227;o da ELA &#233; bastante vari&#225;vel&#44; mas&#44; na maioria dos casos&#44; esta doen&#231;a implica um peso muito significativo para doentes e prestadores de cuidados&#44; em particular no per&#237;odo terminal&#46;</p><p id="spar0030" class="elsevierStyleSimplePara elsevierViewall">Para analisar as caracter&#237;sticas dos doentes com ELA que morrem em casa &#40;DH&#41; e no hospital &#40;DHosp&#41;&#44; para al&#233;m da avalia&#231;&#227;o da variabilidade das pr&#225;ticas cl&#237;nicas&#44; foi realizada uma an&#225;lise retrospetiva dos registos m&#233;dicos &#40;n&#61;77 de 5 hospitais&#41;&#46; Vari&#225;veis&#58; tempo decorrido desde o aparecimento dos sintomas e o in&#237;cio da ventila&#231;&#227;o&#44; caracter&#237;sticas da ventila&#231;&#227;o &#40;dispositivo&#44; m&#225;scara e horas&#47;dia&#41; e dispositivos e procedimentos de apoio&#46;</p> <span class="elsevierStyleSectionTitle" id="sect0020">Resultados</span><p id="spar0035" class="elsevierStyleSimplePara elsevierViewall">Catorze por cento dos doentes foram tratados por traqueotomia&#46; Cinquenta e sete por cento dos doentes morreu em casa &#40;DH&#41;&#46; O tempo m&#233;dio desde o aparecimento dos sintomas foi de 35&#44;93 &#177; 25&#44;89 meses&#44; significativamente inferior em doentes que morrem no hospital &#40;DHosp&#41; &#40;29&#44;28 &#177; 19&#44;69 meses&#41; comparativamente com os que morrem em casa &#40;DH&#41; &#40;41&#44;12 &#177; 29&#44;04&#41; &#40;p&#61;0&#44;044&#41;&#46; A percentagem de doentes com ventila&#231;&#227;o facial foi superior nos DHosp &#40;11&#44;4&#37; vs 39&#46;4&#37;&#44; p&#60;0&#44;005&#41;&#46;</p><p id="spar0040" class="elsevierStyleSimplePara elsevierViewall">DH ou n&#227;o&#44; est&#225; relacionado a um conjunto de factores em que os recursos de sa&#250;de&#44; as atitudes dos m&#233;dicos e o apoio na comunica&#231;&#227;o desempenham um papel importante na tomada de decis&#227;o&#46; Existe uma grande variabilidade entre pa&#237;ses e entre hospitais no mesmo pa&#237;s&#46; Dada a variabilidade de circunst&#226;ncias em cada territ&#243;rio&#44; o local do &#243;bito na ELA poder&#225; n&#227;o ser o elemento mais importante&#44; sendo provavelmente mais relevantes as condi&#231;&#245;es em que o processo se desenrola&#46;</p>"
      ]
    ]
    "multimedia" => array:3 [
      0 => array:7 [
        "identificador" => "tbl0005"
        "etiqueta" => "Table 1"
        "tipo" => "MULTIMEDIATABLA"
        "mostrarFloat" => true
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        "tabla" => array:3 [
          "leyenda" => "<p id="spar0050" class="elsevierStyleSimplePara elsevierViewall"><span class="elsevierStyleItalic">P</span> value&#58; 0&#46;045&#46;</p>"
          "tablatextoimagen" => array:1 [
            0 => array:2 [
              "tabla" => array:1 [
                0 => """
                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><thead title="thead"><tr title="table-row"><td class="td" title="\n
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                  \t\t\t\t" style="border-bottom: 2px solid black">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t\ttop\n
                  \t\t\t\t" style="border-bottom: 2px solid black">Total&#44; <span class="elsevierStyleItalic">n</span> &#40;&#37;&#41;<a class="elsevierStyleCrossRef" href="#tblfn0005"><span class="elsevierStyleSup">&#42;</span></a>&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t  " align="left" valign="\n
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                  \t\t\t\t" style="border-bottom: 2px solid black">Home&#44; <span class="elsevierStyleItalic">n</span> &#40;&#37;&#41; &#42;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t" style="border-bottom: 2px solid black">Hospital&#44; <span class="elsevierStyleItalic">n</span> &#40;&#37;&#41; &#42;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-head\n
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                  \t\t\t\t" style="border-bottom: 2px solid black">&#37; pts dying at home per hospital&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Fondazione S&#46; Maugeri IRCCS&#44; Lumezzane&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t">9 &#40;20&#46;5&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t">15 &#40;45&#46;5&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t">37&#46;5&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Ospedale Civile&#44; Padova&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttop\n
                  \t\t\t\t">13 &#40;29&#46;4&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t">3 &#40;9&#46;1&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t">81&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Azienda Ospedaliero-Universitaria Pisana&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t  " align="char" valign="\n
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                  \t\t\t\t">12 &#40;15&#46;6&#37;&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">9 &#40;20&#46;5&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t">3 &#40;9&#46;1&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t">75&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Hospital Universitari de Bellvitge&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">16 &#40;20&#46;8&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t\ttop\n
                  \t\t\t\t">9 &#40;20&#46;5&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t\ttop\n
                  \t\t\t\t">7 &#40;21&#46;2&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t">56&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t  " align="left" valign="\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Hospital del Mar&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
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                  \t\t\t\t">9 &#40;11&#46;7&#37;&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">4 &#40;9&#46;1&#37;&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">5 &#40;15&#46;2&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t">44&nbsp;\t\t\t\t\t\t\n
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                  """
              ]
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                0 => "xTab523474.png"
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            ]
          ]
          "notaPie" => array:1 [
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              "etiqueta" => "&#42;"
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          ]
        ]
        "descripcion" => array:1 [
          "en" => "<p id="spar0045" class="elsevierStyleSimplePara elsevierViewall">Hospital distribution&#46;</p>"
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      1 => array:7 [
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        "etiqueta" => "Table 2"
        "tipo" => "MULTIMEDIATABLA"
        "mostrarFloat" => true
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        "tabla" => array:2 [
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                  \t\t\t\t" style="border-bottom: 2px solid black">&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t" style="border-bottom: 2px solid black">Home&#44; <span class="elsevierStyleItalic">n</span> &#40;&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t" style="border-bottom: 2px solid black">Hospital&#44; <span class="elsevierStyleItalic">n</span> &#40;&#37;&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttop\n
                  \t\t\t\t">27 &#40;61&#46;4&#37;&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">16 &#40;48&#46;5&#37;&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t  " align="left" valign="\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Female&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">17 &#40;38&#46;6&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">17 &#40;51&#46;5&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
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                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="\n
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                  \t\t\t\t  " colspan="4" align="char" valign="\n
                  \t\t\t\t\ttop\n
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                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Bulbar&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">46 &#40;59&#46;7&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">25 &#40;56&#46;8&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">21 &#40;63&#46;6&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Spinal&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">31 &#40;40&#46;3&#37;&#41;&nbsp;\t\t\t\t\t\t\n
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                  """
              ]
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                  \t\t\t\t</td><td class="td" title="\n
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                  \t\t\t\t">13 &#40;39&#46;4&#37;&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Tracheal ventilation&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Facial ventilation&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>Only during the night&nbsp;\t\t\t\t\t\t\n
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ISSN: 21735115
Original language: English
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