<?xml version="1.0" encoding="ISO-8859-1"?><article xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:xlink="http://www.w3.org/1999/xlink" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance">
<front>
<journal-meta>
<journal-id>1900-3803</journal-id>
<journal-title><![CDATA[Entramado]]></journal-title>
<abbrev-journal-title><![CDATA[Entramado]]></abbrev-journal-title>
<issn>1900-3803</issn>
<publisher>
<publisher-name><![CDATA[Universidad Libre de Cali]]></publisher-name>
</publisher>
</journal-meta>
<article-meta>
<article-id>S1900-38032024000200007</article-id>
<article-id pub-id-type="doi">10.18041/1900-3803/entramado.2.11557</article-id>
<title-group>
<article-title xml:lang="es"><![CDATA[Esclerosis Lateral Amiotrófica en Argentina: una aproximación a las realidades de las personas con ELA y sus entornos de cuidado en el año 2023]]></article-title>
<article-title xml:lang="en"><![CDATA[Amyotrophic Lateral Sclerosis in Argentina: an approach to the realities of people with ALS and their care environments in the year 2023]]></article-title>
<article-title xml:lang="pt"><![CDATA[Esclerose Lateral Amiotrófica na Argentina: uma abordagem das realidades das pessoas com ELA e seus ambientes de atendimento no ano de 2023]]></article-title>
</title-group>
<contrib-group>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Safranoff]]></surname>
<given-names><![CDATA[Ana]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Manzelli]]></surname>
<given-names><![CDATA[Hernán Martín]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Cavalo]]></surname>
<given-names><![CDATA[Lucía Elena]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
</contrib-group>
<aff id="Af1">
<institution><![CDATA[,Centro de Estudios de Población (CENEP/CONICET)  ]]></institution>
<addr-line><![CDATA[Buenos Aires ]]></addr-line>
<country>Argentina</country>
</aff>
<aff id="Af2">
<institution><![CDATA[,Centro de Estudios de Población (CENEP/CONICET)  ]]></institution>
<addr-line><![CDATA[Buenos Aires ]]></addr-line>
<country>Argentina</country>
</aff>
<aff id="Af3">
<institution><![CDATA[,Centro de Estudios de Población (CENEP/CONICET)  ]]></institution>
<addr-line><![CDATA[Buenos Aires ]]></addr-line>
<country>Argentina</country>
</aff>
<pub-date pub-type="pub">
<day>00</day>
<month>12</month>
<year>2024</year>
</pub-date>
<pub-date pub-type="epub">
<day>00</day>
<month>12</month>
<year>2024</year>
</pub-date>
<volume>20</volume>
<numero>2</numero>
<copyright-statement/>
<copyright-year/>
<self-uri xlink:href="http://www.scielo.org.co/scielo.php?script=sci_arttext&amp;pid=S1900-38032024000200007&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://www.scielo.org.co/scielo.php?script=sci_abstract&amp;pid=S1900-38032024000200007&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://www.scielo.org.co/scielo.php?script=sci_pdf&amp;pid=S1900-38032024000200007&amp;lng=en&amp;nrm=iso"></self-uri><abstract abstract-type="short" xml:lang="es"><p><![CDATA[RESUMEN  Introducción.  El objetivo del presente artículo es explorar y analizar las experiencias y realidades cotidianas del universo de las personas con diagnóstico de Esclerosis Lateral Amiotrófica (ELA) y sus entornos de cuidado en Argentina en 2023.  Metodología.  Se presentan los resultados de una encuesta autoadministrada online realizada en los meses de mayo a julio de 2023 a personas con ELA y a cuidadores/as principales. El estudió contó con la participación de 111 personas: 56 con diagnóstico de ELA y 55 cuidadores/as principales.  Resultados y discusión.  El 71,7% de las personas con diagnóstico de ELA encuestadas considera insuficientes los ingresos de su hogar para afrontar sus gastos. Arribar al diagnóstico correcto demora en la mayoría de los casos más de un año. Los/as cuidadores/as principales encuestados/as soportan grandes cargas de trabajo de cuidados que, en la mayoría de los casos, supera las 8 horas diarias. Además, muestran mayores niveles de agotamiento, desánimo, nerviosismo y malestar que las personas con ELA que participaron del estudio. Quienes asumen el rol de cuidadores/as principales son, en su mayoría, mujeres, lo cual coincide con la evidencia aportada por el campo de los cuidados, en donde se señala la estrecha relación que existe entre el género y el trabajo de cuidados. Se evidencia la situación acuciante que las personas con ELA y sus cuidadores/ as atraviesan tanto en el plano económico como en el de la salud física y emocional.  Conclusiones.  Con base en los hallazgos del estudio, se ofrecen un conjunto de consideraciones y recomendaciones destinadas a informar el diseño de políticas y acciones dirigidas a mejorar la situación de las personas con ELA y de quienes asumen el rol de cuidadores/as principales. Asimismo, se identifican posibles futuras líneas de investigación que permitirían ampliar y profundizar los hallazgos aquí expuestos.]]></p></abstract>
<abstract abstract-type="short" xml:lang="en"><p><![CDATA[ABSTRACT  Introduction.  This article explores and analyzes the daily experiences and realities of the universe of people diagnosed with Amyotrophic Lateral Sclerosis (ALS) and their care settings in Argentina in 2023.  Methodology The results  of a self-administered online survey conducted from May to July 2023 on people with ALS and primary caregivers are presented. The study included the participation of lll people: 56 diagnosed with ALS and 55 primary caregivers.  Results and discussion.  71.7% of the people diagnosed with ALS surveyed considered their household income to be insufficient to meet their expenses. Reaching the correct diagnosis takes in most cases more than a year The primary caregivers surveyed carry heavy caregiving workloads that, in most cases, exceed 8 hours per day In addition, they show higher levels of exhaustion, discouragement, nervousness, and discomfort than people with ALS who participated in the study. Those who assume the role of primary caregivers are mostly women, which coincides with the evidence provided by the field of caregiving, which points to the close relationship between gender and caregiving. It is evident the pressing situation that people with ALS and their caregivers go through both economically and in terms of physical and emotional health.  Conclusions.  Based on the study's findings, a set of considerations and recommendations are offered to inform the design of policies and actions aimed at improving the situation of people with ALS and those who assume the role of primary caregivers. It also identifies possible future lines of research that would broaden and deepen the findings presented here.]]></p></abstract>
<abstract abstract-type="short" xml:lang="pt"><p><![CDATA[RESUMO  Introdução.  O objetivo deste artigo é explorar e analisar as experiências e realidades cotidianas do universo de pessoas diagnosticadas com Esclerose Lateral Amiotrófica (ELA) e seus ambientes de atendimento na Argentina em 2023.  Metodologia.  São apresentados os resultados de uma pesquisa on-line autoadministrada realizada nos meses de maio a julho de 2023 com pessoas com ELA e cuidadores primários. O estudo envolveu 111 participantes: 56 pessoas diagnosticadas com ELA e 55 cuidadores primários.  Resultados e discussão.  71,7% das pessoas diagnosticadas com ELA pesquisadas consideraram que sua renda familiar era insuficiente para cobrir suas despesas. A obtenção do diagnóstico correto leva, na maioria dos casos, mais de um ano. Os cuidadores primários pesquisados têm cargas de trabalho pesadas de cuidados que, no a maioria dos casos,, excedem 8 horas por dia. Além disso, eles apresentam níveis mais altos de exaustão, desânimo, nervosismo e desconforto do que as pessoas com ELA que participaram do estudo. Aqueles que assumem o papel de cuidadores primários são, em sua maioria, mulheres, o que é consistente com as evidências do campo de cuidados que apontam para a estreita relação entre gênero e cuidados. Está claro que as pessoas com ELA e seus cuidadores estão em uma situação muito difícil, tanto financeiramente quanto em termos de saúde física e emocional.  Conclusões.  Com base nos resultados do estudo, é oferecido um conjunto de considerações e recomendações para informar a elaboração de políticas e ações destinadas a melhorar a situação das pessoas com ELA e daquelas que assumem o papel de cuidadores primários. O estudo também identifica possíveis linhas de pesquisa futuras que poderiam ampliar e aprofundar os resultados aqui apresentados.]]></p></abstract>
<kwd-group>
<kwd lng="es"><![CDATA[Cuidadores]]></kwd>
<kwd lng="es"><![CDATA[cuidadoras]]></kwd>
<kwd lng="es"><![CDATA[personas con Esclerosis Lateral Amiotrófica]]></kwd>
<kwd lng="es"><![CDATA[encuesta]]></kwd>
<kwd lng="es"><![CDATA[trabajo de cuidados]]></kwd>
<kwd lng="es"><![CDATA[enfermedades poco frecuentes]]></kwd>
<kwd lng="es"><![CDATA[cobertura de salud]]></kwd>
<kwd lng="es"><![CDATA[síndrome del cuidador quemado]]></kwd>
<kwd lng="en"><![CDATA[Caregivers]]></kwd>
<kwd lng="en"><![CDATA[people diagnosed with Amyotrophic Lateral Sclerosis]]></kwd>
<kwd lng="en"><![CDATA[survey]]></kwd>
<kwd lng="en"><![CDATA[care work]]></kwd>
<kwd lng="en"><![CDATA[infrequent illnesses]]></kwd>
<kwd lng="en"><![CDATA[health coverage]]></kwd>
<kwd lng="en"><![CDATA[caregiver burden syndrome]]></kwd>
<kwd lng="pt"><![CDATA[Cuidadores]]></kwd>
<kwd lng="pt"><![CDATA[pessoas com Esclerose Lateral Amiotrófica]]></kwd>
<kwd lng="pt"><![CDATA[pesquisa]]></kwd>
<kwd lng="pt"><![CDATA[trabalho de assistência]]></kwd>
<kwd lng="pt"><![CDATA[doenças raras]]></kwd>
<kwd lng="pt"><![CDATA[cobertura de saúde]]></kwd>
<kwd lng="pt"><![CDATA[síndrome do cuidador exausto]]></kwd>
</kwd-group>
</article-meta>
</front><back>
<ref-list>
<ref id="B1">
<label>1</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[ANDO]]></surname>
<given-names><![CDATA[Hikari]]></given-names>
</name>
<name>
<surname><![CDATA[COUSINS]]></surname>
<given-names><![CDATA[Rosanna]]></given-names>
</name>
<name>
<surname><![CDATA[YOUNG]]></surname>
<given-names><![CDATA[Carolyn A]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Exploring and addressing 'concerns' for significant others to extend the understanding of quality of life with amyotrophic lateral sclerosis: a qualitative study]]></article-title>
<source><![CDATA[Journal of central nervous system disease]]></source>
<year>2019</year>
<volume>11</volume>
</nlm-citation>
</ref>
<ref id="B2">
<label>2</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[AOUN]]></surname>
<given-names><![CDATA[Brena]]></given-names>
</name>
<name>
<surname><![CDATA[FUNK]]></surname>
<given-names><![CDATA[Chris]]></given-names>
</name>
<name>
<surname><![CDATA[GRANDE]]></surname>
<given-names><![CDATA[Gunn]]></given-names>
</name>
<name>
<surname><![CDATA[STAJDUHAR]]></surname>
<given-names><![CDATA[Kelli J.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions]]></article-title>
<source><![CDATA[Palliative medicine]]></source>
<year>2013</year>
<volume>27</volume>
<numero>5</numero>
<issue>5</issue>
<page-range>437-46</page-range></nlm-citation>
</ref>
<ref id="B3">
<label>3</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[BALLESTER]]></surname>
<given-names><![CDATA[Pedro Olmedo]]></given-names>
</name>
<name>
<surname><![CDATA[GARCÍA BERENGUER]]></surname>
<given-names><![CDATA[Nieves María]]></given-names>
</name>
<name>
<surname><![CDATA[LLORET IRLES]]></surname>
<given-names><![CDATA[Daniel]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Necesidades psicosociales en cuidados paliativos de las personas con esclerosis lateral amiotrófica, familiares y cuidadores/as. Una revisión de revisiones]]></article-title>
<source><![CDATA[Medicina paliativa]]></source>
<year>2022</year>
<volume>29</volume>
<numero>3</numero>
<issue>3</issue>
<page-range>201-10</page-range></nlm-citation>
</ref>
<ref id="B4">
<label>4</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[BERGIN]]></surname>
<given-names><![CDATA[Susan]]></given-names>
</name>
<name>
<surname><![CDATA[MOCKFORD]]></surname>
<given-names><![CDATA[Carole]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Recommendations to support informal carers of people living with motor neurone disease]]></article-title>
<source><![CDATA[British journal of community nursing]]></source>
<year>2016</year>
<volume>21</volume>
<numero>10</numero>
<issue>10</issue>
<page-range>518-24</page-range></nlm-citation>
</ref>
<ref id="B5">
<label>5</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[BETTINI]]></surname>
<given-names><![CDATA[Mariela]]></given-names>
</name>
<name>
<surname><![CDATA[GARGIULO-MONACHELLI]]></surname>
<given-names><![CDATA[Gisella M.]]></given-names>
</name>
<name>
<surname><![CDATA[RODRÍGUEZ]]></surname>
<given-names><![CDATA[Gabriel]]></given-names>
</name>
<name>
<surname><![CDATA[REY]]></surname>
<given-names><![CDATA[Raul C.]]></given-names>
</name>
<name>
<surname><![CDATA[MARTINEZ PERALTA]]></surname>
<given-names><![CDATA[Liliana]]></given-names>
</name>
<name>
<surname><![CDATA[SICA]]></surname>
<given-names><![CDATA[Roberto E.P]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Epidemiology of amyotrophic lateral sclerosis patients in a centre in Buenos Aires]]></article-title>
<source><![CDATA[Arquivos de neuro-psiquiatria]]></source>
<year>2011</year>
<volume>69</volume>
<page-range>867-70</page-range></nlm-citation>
</ref>
<ref id="B6">
<label>6</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[BESWICK]]></surname>
<given-names><![CDATA[Emily]]></given-names>
</name>
<name>
<surname><![CDATA[PARK]]></surname>
<given-names><![CDATA[Emily]]></given-names>
</name>
<name>
<surname><![CDATA[WONG]]></surname>
<given-names><![CDATA[Charis]]></given-names>
</name>
<name>
<surname><![CDATA[MEHTA]]></surname>
<given-names><![CDATA[Arpan R]]></given-names>
</name>
<name>
<surname><![CDATA[DAKIN]]></surname>
<given-names><![CDATA[Rachel]]></given-names>
</name>
<name>
<surname><![CDATA[CHANDRAN]]></surname>
<given-names><![CDATA[Siddharthan]]></given-names>
</name>
<name>
<surname><![CDATA[NEWTON]]></surname>
<given-names><![CDATA[Judith]]></given-names>
</name>
<name>
<surname><![CDATA[CARSON]]></surname>
<given-names><![CDATA[Alan]]></given-names>
</name>
<name>
<surname><![CDATA[ABRAHAMS]]></surname>
<given-names><![CDATA[Sharon]]></given-names>
</name>
<name>
<surname><![CDATA[PAL]]></surname>
<given-names><![CDATA[Suvankar]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[A systematic review of neuropsychiatric and cognitive assessments used in clinical trials for amyotrophic lateral sclerosis]]></article-title>
<source><![CDATA[Journal of neurology]]></source>
<year>2021</year>
<volume>268</volume>
<page-range>4510-21</page-range></nlm-citation>
</ref>
<ref id="B7">
<label>7</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[CAMACHO]]></surname>
<given-names><![CDATA[Ana]]></given-names>
</name>
<name>
<surname><![CDATA[ESTEBAN]]></surname>
<given-names><![CDATA[Jesús]]></given-names>
</name>
<name>
<surname><![CDATA[PARADAS]]></surname>
<given-names><![CDATA[Carmen]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Informe de impacto social de la ELA y las enfermedades neuromusculares]]></article-title>
<source><![CDATA[Fundación Española de Enfermedades Neurológicas]]></source>
<year>2014</year>
<page-range>39</page-range></nlm-citation>
</ref>
<ref id="B8">
<label>8</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[CHIÒ]]></surname>
<given-names><![CDATA[Adriano]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Cognitive impairment across ALS clinical stages in a population-based cohort]]></article-title>
<source><![CDATA[Neurology]]></source>
<year>2019</year>
<volume>93</volume>
<numero>10</numero>
<issue>10</issue>
<page-range>e984-94</page-range></nlm-citation>
</ref>
<ref id="B9">
<label>9</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[CHIÒ]]></surname>
<given-names><![CDATA[Adriano]]></given-names>
</name>
<name>
<surname><![CDATA[GAUTHIER]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
<name>
<surname><![CDATA[MONTUSCHI]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
<name>
<surname><![CDATA[CALVO]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
<name>
<surname><![CDATA[DI VITO]]></surname>
<given-names><![CDATA[N.]]></given-names>
</name>
<name>
<surname><![CDATA[GHIGLIONE]]></surname>
<given-names><![CDATA[P.]]></given-names>
</name>
<name>
<surname><![CDATA[MUTANI]]></surname>
<given-names><![CDATA[R.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[A cross sectional study on determinants of quality of life in ALS]]></article-title>
<source><![CDATA[Journal of Neurology, Neurosurgery &amp; Psychiatry]]></source>
<year>2004</year>
<volume>75</volume>
<numero>11</numero>
<issue>11</issue>
<page-range>1597-601</page-range></nlm-citation>
</ref>
<ref id="B10">
<label>10</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[CIPOLLETTA]]></surname>
<given-names><![CDATA[Sabrina]]></given-names>
</name>
<name>
<surname><![CDATA[AMICUCCI]]></surname>
<given-names><![CDATA[Linda]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[The family experience of living with a person with amyotrophic lateral sclerosis: a qualitative study]]></article-title>
<source><![CDATA[International Journal of Psychology]]></source>
<year>2015</year>
<volume>50</volume>
<numero>4</numero>
<issue>4</issue>
<page-range>288-94</page-range></nlm-citation>
</ref>
<ref id="B11">
<label>11</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[CUPP]]></surname>
<given-names><![CDATA[Julia]]></given-names>
</name>
<name>
<surname><![CDATA[SIMMONS]]></surname>
<given-names><![CDATA[Zachary]]></given-names>
</name>
<name>
<surname><![CDATA[BERG]]></surname>
<given-names><![CDATA[Arthur]]></given-names>
</name>
<name>
<surname><![CDATA[FELGOISE]]></surname>
<given-names><![CDATA[Stephanie. H.]]></given-names>
</name>
<name>
<surname><![CDATA[WALSH]]></surname>
<given-names><![CDATA[Susan M.]]></given-names>
</name>
<name>
<surname><![CDATA[STEPHENS]]></surname>
<given-names><![CDATA[Helen E.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Psychological health in patients with ALS is maintained as physical function declines]]></article-title>
<source><![CDATA[Amyotrophic Lateral Sclerosis]]></source>
<year>2011</year>
<volume>12</volume>
<numero>4</numero>
<issue>4</issue>
<page-range>290-6</page-range></nlm-citation>
</ref>
<ref id="B12">
<label>12</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[DE MARCHI]]></surname>
<given-names><![CDATA[Fabiola]]></given-names>
</name>
<name>
<surname><![CDATA[SARNELLI]]></surname>
<given-names><![CDATA[Maria Francesca]]></given-names>
</name>
<name>
<surname><![CDATA[SOLARA]]></surname>
<given-names><![CDATA[Valentina]]></given-names>
</name>
<name>
<surname><![CDATA[BERSANO]]></surname>
<given-names><![CDATA[Enrica]]></given-names>
</name>
<name>
<surname><![CDATA[CANTELLO]]></surname>
<given-names><![CDATA[Roberto]]></given-names>
</name>
<name>
<surname><![CDATA[MAZZINI]]></surname>
<given-names><![CDATA[Letizia]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Depression and risk of cognitive dysfunctions in amyotrophic lateral sclerosis]]></article-title>
<source><![CDATA[Acta Neurologica Scandinavica]]></source>
<year>2019</year>
<volume>139</volume>
<numero>5</numero>
<issue>5</issue>
<page-range>438-45</page-range></nlm-citation>
</ref>
<ref id="B13">
<label>13</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[DE WIT]]></surname>
<given-names><![CDATA[Jessica]]></given-names>
</name>
<name>
<surname><![CDATA[BAKKER]]></surname>
<given-names><![CDATA[Johanna. M.]]></given-names>
</name>
<name>
<surname><![CDATA[BEELEN]]></surname>
<given-names><![CDATA[Anita]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Caregiver burden in amyotrophic lateral sclerosis: a systematic review]]></article-title>
<source><![CDATA[Palliative medicine]]></source>
<year>2018</year>
<volume>32</volume>
<numero>1</numero>
<issue>1</issue>
<page-range>231-45</page-range></nlm-citation>
</ref>
<ref id="B14">
<label>14</label><nlm-citation citation-type="book">
<person-group person-group-type="author">
<name>
<surname><![CDATA[DUMANCELA MINA]]></surname>
<given-names><![CDATA[Gabriela]]></given-names>
</name>
</person-group>
<source><![CDATA[Investigación nacional sobre esclerosis lateral amiotrófica Tesis de Licenciatura]]></source>
<year>2012</year>
<publisher-loc><![CDATA[Quito ]]></publisher-loc>
<publisher-name><![CDATA[Universidad San Francisco de Quito]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B15">
<label>15</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[DUTTA]]></surname>
<given-names><![CDATA[Kallol]]></given-names>
</name>
<name>
<surname><![CDATA[THAMMISETTY]]></surname>
<given-names><![CDATA[Sai Sampath]]></given-names>
</name>
<name>
<surname><![CDATA[BOUTEJ]]></surname>
<given-names><![CDATA[Hejer]]></given-names>
</name>
<name>
<surname><![CDATA[BAREIL]]></surname>
<given-names><![CDATA[Christine]]></given-names>
</name>
<name>
<surname><![CDATA[JULIEN]]></surname>
<given-names><![CDATA[Jean Pierre.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Mitigation of ALS pathology by neuron-specific inhibition of nuclear factor kappa B signaling]]></article-title>
<source><![CDATA[Journal of Neuroscience]]></source>
<year>2020</year>
<volume>40</volume>
<numero>26</numero>
<issue>26</issue>
<page-range>5137-54</page-range></nlm-citation>
</ref>
<ref id="B16">
<label>16</label><nlm-citation citation-type="">
<collab>FUNDACIÓN ESTEBAN BULLRICH</collab>
<source><![CDATA[Informe Final: Estado de Situación de la Esclerosis Lateral Amiotrófica en América Latina y el Caribe]]></source>
<year>2021</year>
</nlm-citation>
</ref>
<ref id="B17">
<label>17</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[GALVIN]]></surname>
<given-names><![CDATA[Miriam]]></given-names>
</name>
<name>
<surname><![CDATA[CARNEY]]></surname>
<given-names><![CDATA[Sile]]></given-names>
</name>
<name>
<surname><![CDATA[CORR]]></surname>
<given-names><![CDATA[Bernie]]></given-names>
</name>
<name>
<surname><![CDATA[MAYS]]></surname>
<given-names><![CDATA[Lain]]></given-names>
</name>
<name>
<surname><![CDATA[PENDER]]></surname>
<given-names><![CDATA[Niall]]></given-names>
</name>
<name>
<surname><![CDATA[HARDIMAN]]></surname>
<given-names><![CDATA[Orla]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis]]></article-title>
<source><![CDATA[BMJ open]]></source>
<year>2018</year>
<volume>8</volume>
<numero>1</numero>
<issue>1</issue>
</nlm-citation>
</ref>
<ref id="B18">
<label>18</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[GANZINI]]></surname>
<given-names><![CDATA[Linda]]></given-names>
</name>
<name>
<surname><![CDATA[JOHNSTON]]></surname>
<given-names><![CDATA[Wendy S.]]></given-names>
</name>
<name>
<surname><![CDATA[HOFFMAN]]></surname>
<given-names><![CDATA[William F.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Correlates of suffering in amyotrophic lateral sclerosis]]></article-title>
<source><![CDATA[Neurology]]></source>
<year>1999</year>
<volume>52</volume>
<numero>7</numero>
<issue>7</issue>
<page-range>1434</page-range></nlm-citation>
</ref>
<ref id="B19">
<label>19</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[GAUTHIER]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
<name>
<surname><![CDATA[VIGNOLA]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
<name>
<surname><![CDATA[CALVO]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
<name>
<surname><![CDATA[CAVALLO]]></surname>
<given-names><![CDATA[E.]]></given-names>
</name>
<name>
<surname><![CDATA[MOGLIA]]></surname>
<given-names><![CDATA[C.]]></given-names>
</name>
<name>
<surname><![CDATA[SELLITTI]]></surname>
<given-names><![CDATA[L.]]></given-names>
</name>
<name>
<surname><![CDATA[CHIO]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[A longitudinal study on quality of life and depression in ALS patient-caregiver couples]]></article-title>
<source><![CDATA[Neurology]]></source>
<year>2007</year>
<volume>68</volume>
<numero>12</numero>
<issue>12</issue>
<page-range>923-6</page-range></nlm-citation>
</ref>
<ref id="B20">
<label>20</label><nlm-citation citation-type="book">
<person-group person-group-type="author">
<name>
<surname><![CDATA[GNAVI]]></surname>
<given-names><![CDATA[Anahí Gisel]]></given-names>
</name>
</person-group>
<source><![CDATA[Cuidado de pacientes con ELA en La Pampa, entorno profesional y socio afectivo]]></source>
<year>2020</year>
<publisher-name><![CDATA[Universidad Nacional de La Pampa]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B21">
<label>21</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[GOLDSTEIN]]></surname>
<given-names><![CDATA[L. H.]]></given-names>
</name>
<name>
<surname><![CDATA[ATKINS]]></surname>
<given-names><![CDATA[L.]]></given-names>
</name>
<name>
<surname><![CDATA[LEIGH]]></surname>
<given-names><![CDATA[P. N.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Correlates of quality of life in people with motor neuron disease (MND)]]></article-title>
<source><![CDATA[Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders]]></source>
<year>2002</year>
<volume>3</volume>
<numero>3</numero>
<issue>3</issue>
<page-range>123-9</page-range></nlm-citation>
</ref>
<ref id="B22">
<label>22</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[GÓMEZ]]></surname>
<given-names><![CDATA[Silvia Solera]]></given-names>
</name>
<name>
<surname><![CDATA[BALLESTER]]></surname>
<given-names><![CDATA[María Cuerda]]></given-names>
</name>
<name>
<surname><![CDATA[CANTUS]]></surname>
<given-names><![CDATA[David Sancho.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Impacto de la Esclerosis Lateral Amiotrófica (ELA) en el cuidador principal]]></article-title>
<source><![CDATA[Enfermería integral: Revista científica del Colegio Oficial de Enfermería de Valencia]]></source>
<year>2020</year>
<numero>126</numero>
<issue>126</issue>
<page-range>61-5</page-range></nlm-citation>
</ref>
<ref id="B23">
<label>23</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[HEIDARI]]></surname>
<given-names><![CDATA[Mohammad Eghbal]]></given-names>
</name>
<name>
<surname><![CDATA[NADALI]]></surname>
<given-names><![CDATA[Javad]]></given-names>
</name>
<name>
<surname><![CDATA[PAROUHAN]]></surname>
<given-names><![CDATA[Ali]]></given-names>
</name>
<name>
<surname><![CDATA[AZARAFRAZ]]></surname>
<given-names><![CDATA[Mahdi]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Seyed Sina Naghibi, y GHAREBAGHI, Alireza. Prevalence of depression among amyotrophic lateral sclerosis (ALS) patients: A systematic review and meta-analysis]]></article-title>
<source><![CDATA[Journal of affective disorders]]></source>
<year>2021</year>
<volume>287</volume>
<page-range>182-90</page-range></nlm-citation>
</ref>
<ref id="B24">
<label>24</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[ILSE]]></surname>
<given-names><![CDATA[Benjamin]]></given-names>
</name>
<name>
<surname><![CDATA[PRELL]]></surname>
<given-names><![CDATA[Tino]]></given-names>
</name>
<name>
<surname><![CDATA[WALTHER]]></surname>
<given-names><![CDATA[Mario]]></given-names>
</name>
<name>
<surname><![CDATA[HARTUNG]]></surname>
<given-names><![CDATA[Viktor]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Relationships between disease severity, social support and health-related quality of life in patients with amyotrophic lateral sclerosis]]></article-title>
<source><![CDATA[Social Indicators Research]]></source>
<year>2015</year>
<volume>120</volume>
<page-range>871-82</page-range></nlm-citation>
</ref>
<ref id="B25">
<label>25</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[IWASAKI]]></surname>
<given-names><![CDATA[Yasuo]]></given-names>
</name>
<name>
<surname><![CDATA[IKEDA]]></surname>
<given-names><![CDATA[Ken]]></given-names>
</name>
<name>
<surname><![CDATA[KINOSHITA]]></surname>
<given-names><![CDATA[Masao]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[The diagnostic pathway in amyotrophic lateral sclerosis]]></article-title>
<source><![CDATA[Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders]]></source>
<year>2001</year>
<volume>2</volume>
<numero>3</numero>
<issue>3</issue>
<page-range>123-6</page-range></nlm-citation>
</ref>
<ref id="B26">
<label>26</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[LO COCO]]></surname>
<given-names><![CDATA[Gianluca]]></given-names>
</name>
<name>
<surname><![CDATA[LO COCO]]></surname>
<given-names><![CDATA[Daniele]]></given-names>
</name>
<name>
<surname><![CDATA[CICERO]]></surname>
<given-names><![CDATA[Viviana]]></given-names>
</name>
<name>
<surname><![CDATA[OLIVERI]]></surname>
<given-names><![CDATA[Antonino]]></given-names>
</name>
<name>
<surname><![CDATA[LO VERSO]]></surname>
<given-names><![CDATA[Girolamo]]></given-names>
</name>
<name>
<surname><![CDATA[PICCOLI]]></surname>
<given-names><![CDATA[Federico]]></given-names>
</name>
<name>
<surname><![CDATA[LA BELLA]]></surname>
<given-names><![CDATA[Vincenzo]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Individual and health-related quality of life assessment in amyotrophic lateral sclerosis patients and their caregivers]]></article-title>
<source><![CDATA[Journal of the Neurological Sciences]]></source>
<year>2005</year>
<volume>238</volume>
<page-range>11-7</page-range></nlm-citation>
</ref>
<ref id="B27">
<label>27</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[MATUZ]]></surname>
<given-names><![CDATA[Tamara]]></given-names>
</name>
<name>
<surname><![CDATA[BIRBAUMER]]></surname>
<given-names><![CDATA[Niels]]></given-names>
</name>
<name>
<surname><![CDATA[HAUTZINGER]]></surname>
<given-names><![CDATA[Martin]]></given-names>
</name>
<name>
<surname><![CDATA[KÜBLER]]></surname>
<given-names><![CDATA[Andrea]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Coping with amyotrophic lateral sclerosis: an integrative view]]></article-title>
<source><![CDATA[Journal of Neurology, Neurosurgery &amp; Psychiatry]]></source>
<year>2010</year>
<volume>81</volume>
<numero>8</numero>
<issue>8</issue>
<page-range>893-8</page-range></nlm-citation>
</ref>
<ref id="B28">
<label>28</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[MARTÍNEZ-CAMPO]]></surname>
<given-names><![CDATA[Yolanda]]></given-names>
</name>
<name>
<surname><![CDATA[HOMEDES]]></surname>
<given-names><![CDATA[Christian]]></given-names>
</name>
<name>
<surname><![CDATA[LAZARO]]></surname>
<given-names><![CDATA[Ana]]></given-names>
</name>
<name>
<surname><![CDATA[ALARCÓN]]></surname>
<given-names><![CDATA[Raquel]]></given-names>
</name>
<name>
<surname><![CDATA[CAMPO]]></surname>
<given-names><![CDATA[David]]></given-names>
</name>
<name>
<surname><![CDATA[RIERA]]></surname>
<given-names><![CDATA[Mariona]]></given-names>
</name>
<name>
<surname><![CDATA[DOMÍNGUEZ]]></surname>
<given-names><![CDATA[Raúl]]></given-names>
</name>
<name>
<surname><![CDATA[POVEDANO]]></surname>
<given-names><![CDATA[Mónica]]></given-names>
</name>
<name>
<surname><![CDATA[CASASNOVAS]]></surname>
<given-names><![CDATA[Carlos]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Observational study of patients in Spain with amyotrophic lateral sclerosis: correlations between clinical status, quality of life, and dignity]]></article-title>
<source><![CDATA[BMC palliative care]]></source>
<year>2017</year>
<volume>16</volume>
<page-range>1-7</page-range></nlm-citation>
</ref>
<ref id="B29">
<label>29</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[MARTINEZ PIZARRO]]></surname>
<given-names><![CDATA[Sandra]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Síndrome del cuidador quemado]]></article-title>
<source><![CDATA[Revista clínica de medicina de familia]]></source>
<year>2020</year>
<volume>13</volume>
<numero>1</numero>
<issue>1</issue>
<page-range>97-100</page-range></nlm-citation>
</ref>
<ref id="B30">
<label>30</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[MCLEOD]]></surname>
<given-names><![CDATA[Janet E.]]></given-names>
</name>
<name>
<surname><![CDATA[CLARKE]]></surname>
<given-names><![CDATA[David M]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[A review of psychosocial aspects of motor neurone disease]]></article-title>
<source><![CDATA[Journal of the neurological sciences]]></source>
<year>2007</year>
<volume>258</volume>
<numero>1-2</numero>
<issue>1-2</issue>
<page-range>4-10</page-range></nlm-citation>
</ref>
<ref id="B31">
<label>31</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[NEUDERT]]></surname>
<given-names><![CDATA[Christian]]></given-names>
</name>
<name>
<surname><![CDATA[WASNER]]></surname>
<given-names><![CDATA[Maria]]></given-names>
</name>
<name>
<surname><![CDATA[BORASIO]]></surname>
<given-names><![CDATA[Gian Domenico]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Individual quality of life is not correlated with health-related quality of life or physical function in patients with amyotrophic lateral sclerosis]]></article-title>
<source><![CDATA[Journal of palliative medicine]]></source>
<year>2004</year>
<volume>7</volume>
<numero>4</numero>
<issue>4</issue>
<page-range>551-7</page-range></nlm-citation>
</ref>
<ref id="B32">
<label>32</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[OLSSON OZANNE]]></surname>
<given-names><![CDATA[Anneli G.]]></given-names>
</name>
<name>
<surname><![CDATA[STRANG]]></surname>
<given-names><![CDATA[Susann]]></given-names>
</name>
<name>
<surname><![CDATA[PERSSON]]></surname>
<given-names><![CDATA[Lennart I.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Quality of life, anxiety and depression in ALS patients and their next of kin]]></article-title>
<source><![CDATA[Journal of clinical nursing]]></source>
<year>2011</year>
<volume>20</volume>
<numero>1-2</numero>
<issue>1-2</issue>
<page-range>283-91</page-range></nlm-citation>
</ref>
<ref id="B33">
<label>33</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[PAGANONI]]></surname>
<given-names><![CDATA[Sabrina]]></given-names>
</name>
<name>
<surname><![CDATA[MCDONNELL]]></surname>
<given-names><![CDATA[Erin]]></given-names>
</name>
<name>
<surname><![CDATA[SCHOENFELD]]></surname>
<given-names><![CDATA[David]]></given-names>
</name>
<name>
<surname><![CDATA[YU]]></surname>
<given-names><![CDATA[Hong]]></given-names>
</name>
<name>
<surname><![CDATA[DENG]]></surname>
<given-names><![CDATA[Jing]]></given-names>
</name>
<name>
<surname><![CDATA[ATASSI]]></surname>
<given-names><![CDATA[Hamza]]></given-names>
</name>
<name>
<surname><![CDATA[SHERMAN]]></surname>
<given-names><![CDATA[Alexander]]></given-names>
</name>
<name>
<surname><![CDATA[YERRAMILLI-RAO]]></surname>
<given-names><![CDATA[Padmaja]]></given-names>
</name>
<name>
<surname><![CDATA[CUDKOWICZ]]></surname>
<given-names><![CDATA[Merit]]></given-names>
</name>
<name>
<surname><![CDATA[ATASSI]]></surname>
<given-names><![CDATA[Nazem]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Functional decline is associated with hopelessness in amyotrophic lateral sclerosis (ALS)]]></article-title>
<source><![CDATA[Journal of neurology &amp; neurophysiology]]></source>
<year>2017</year>
<volume>8</volume>
<numero>2</numero>
<issue>2</issue>
</nlm-citation>
</ref>
<ref id="B34">
<label>34</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[PAGNINI]]></surname>
<given-names><![CDATA[Francesco]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Psychological wellbeing and quality of life in amyotrophic lateral sclerosis: a review]]></article-title>
<source><![CDATA[International Journal of Psychology]]></source>
<year>2013</year>
<volume>48</volume>
<numero>3</numero>
<issue>3</issue>
<page-range>194-205</page-range></nlm-citation>
</ref>
<ref id="B35">
<label>35</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[PAGNINI]]></surname>
<given-names><![CDATA[Francesco]]></given-names>
</name>
<name>
<surname><![CDATA[ROSSI]]></surname>
<given-names><![CDATA[Gabriella]]></given-names>
</name>
<name>
<surname><![CDATA[LUNETTA]]></surname>
<given-names><![CDATA[Christian]]></given-names>
</name>
<name>
<surname><![CDATA[BANFI]]></surname>
<given-names><![CDATA[Paolo]]></given-names>
</name>
<name>
<surname><![CDATA[CASTELNUOVO]]></surname>
<given-names><![CDATA[Gianluca]]></given-names>
</name>
<name>
<surname><![CDATA[CORBO]]></surname>
<given-names><![CDATA[Massimo]]></given-names>
</name>
<name>
<surname><![CDATA[MOLINARI]]></surname>
<given-names><![CDATA[Enrico]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Burden, depression, and anxiety]]></article-title>
<source><![CDATA[Psychology, Health &amp; Medicine]]></source>
<year>2010</year>
<volume>15</volume>
<numero>6</numero>
<issue>6</issue>
<page-range>685-93</page-range></nlm-citation>
</ref>
<ref id="B36">
<label>36</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[PAZ-RODRÍGUEZ]]></surname>
<given-names><![CDATA[F.]]></given-names>
</name>
<name>
<surname><![CDATA[ANDRADE-PALOS]]></surname>
<given-names><![CDATA[P.]]></given-names>
</name>
<name>
<surname><![CDATA[LLANOS-DEL PILAR]]></surname>
<given-names><![CDATA[A. M.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Consecuencias emocionales del cuidado del paciente con esclerosis lateral amiotrófica]]></article-title>
<source><![CDATA[Rev Neurol]]></source>
<year>2005</year>
<volume>40</volume>
<numero>8</numero>
<issue>8</issue>
<page-range>459-64</page-range></nlm-citation>
</ref>
<ref id="B37">
<label>37</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[PERDOMO-ROMERO]]></surname>
<given-names><![CDATA[Alix Yaneth]]></given-names>
</name>
<name>
<surname><![CDATA[RAMÍREZ-PERDOMO]]></surname>
<given-names><![CDATA[Claudia Andrea]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Percepción de calidad de vida en cuidadores de pacientes con demencia]]></article-title>
<source><![CDATA[Revista Científica de la Sociedad Española de Enfermería Neurológica]]></source>
<year>2017</year>
<volume>46</volume>
<page-range>26-31</page-range></nlm-citation>
</ref>
<ref id="B38">
<label>38</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[PÉREZ AKLY]]></surname>
<given-names><![CDATA[Manuel]]></given-names>
</name>
<name>
<surname><![CDATA[SCHIAVA]]></surname>
<given-names><![CDATA[Marianela]]></given-names>
</name>
<name>
<surname><![CDATA[MELCOM]]></surname>
<given-names><![CDATA[Mario]]></given-names>
</name>
<name>
<surname><![CDATA[RODRÍGUEZ]]></surname>
<given-names><![CDATA[Gabriel]]></given-names>
</name>
<name>
<surname><![CDATA[GARGIULO]]></surname>
<given-names><![CDATA[Gisella]]></given-names>
</name>
<name>
<surname><![CDATA[BETTINI]]></surname>
<given-names><![CDATA[Mariela]]></given-names>
</name>
<name>
<surname><![CDATA[FULGENZI]]></surname>
<given-names><![CDATA[Ernesto]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Estudio epidemiológico multicéntrico sobre esclerosis lateral amiotrófica en la Ciudad de Buenos Aires]]></article-title>
<source><![CDATA[Neurología Argentina]]></source>
<year>2017</year>
<volume>9</volume>
<numero>4</numero>
<issue>4</issue>
<page-range>225-30</page-range></nlm-citation>
</ref>
<ref id="B39">
<label>39</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[PINHO]]></surname>
<given-names><![CDATA[Ana Catarina]]></given-names>
</name>
<name>
<surname><![CDATA[GONÇALVES]]></surname>
<given-names><![CDATA[Edna]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Are amyotrophic lateral sclerosis caregivers at higher risk for health problems?]]></article-title>
<source><![CDATA[Acta Médica Portuguesa]]></source>
<year>2016</year>
<volume>29</volume>
<numero>1</numero>
<issue>1</issue>
<page-range>56-62</page-range></nlm-citation>
</ref>
<ref id="B40">
<label>40</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[PRADO]]></surname>
<given-names><![CDATA[Laura de Godoy Rousseff]]></given-names>
</name>
<name>
<surname><![CDATA[BICALHO]]></surname>
<given-names><![CDATA[L. C. D.,]]></given-names>
</name>
<name>
<surname><![CDATA[TEIXEIRA]]></surname>
<given-names><![CDATA[A. L.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Depression and anxiety in a case series of amyotrophic lateral sclerosis: frequency and association with clinical features]]></article-title>
<source><![CDATA[Einstein]]></source>
<year>2017</year>
<volume>15</volume>
<numero>1</numero>
<issue>1</issue>
<page-range>58-60</page-range><publisher-loc><![CDATA[Sao Paulo ]]></publisher-loc>
</nlm-citation>
</ref>
<ref id="B41">
<label>41</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[RABKIN]]></surname>
<given-names><![CDATA[Judith G.]]></given-names>
</name>
<name>
<surname><![CDATA[ALBERT]]></surname>
<given-names><![CDATA[Steven M.]]></given-names>
</name>
<name>
<surname><![CDATA[ROWLAND]]></surname>
<given-names><![CDATA[Lewis P.]]></given-names>
</name>
<name>
<surname><![CDATA[MITSUMOTO]]></surname>
<given-names><![CDATA[Hiroshi]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[How common is depression among ALS caregivers? A longitudinal study]]></article-title>
<source><![CDATA[Amyotrophic Lateral Sclerosis]]></source>
<year>2009</year>
<volume>10</volume>
<numero>5-6</numero>
<issue>5-6</issue>
<page-range>448-55</page-range></nlm-citation>
</ref>
<ref id="B42">
<label>42</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[RICHARDS]]></surname>
<given-names><![CDATA[Danielle]]></given-names>
</name>
<name>
<surname><![CDATA[MORREN]]></surname>
<given-names><![CDATA[John A.]]></given-names>
</name>
<name>
<surname><![CDATA[PIORO]]></surname>
<given-names><![CDATA[Erik P.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Time to diagnosis and factors affecting diagnostic delay in amyotrophic lateral sclerosis]]></article-title>
<source><![CDATA[Journal of the Neurological Sciences]]></source>
<year>2020</year>
<volume>417</volume>
<page-range>117054</page-range></nlm-citation>
</ref>
<ref id="B43">
<label>43</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[SÁNCHEZ-LÓPEZ]]></surname>
<given-names><![CDATA[C. R.]]></given-names>
</name>
<name>
<surname><![CDATA[PERESTELO-PÉREZ]]></surname>
<given-names><![CDATA[L.]]></given-names>
</name>
<name>
<surname><![CDATA[RAMOS-PÉREZ]]></surname>
<given-names><![CDATA[C.]]></given-names>
</name>
<name>
<surname><![CDATA[LÓPEZ-BASTIDA]]></surname>
<given-names><![CDATA[J.]]></given-names>
</name>
<name>
<surname><![CDATA[SERRANO-AGUILAR]]></surname>
<given-names><![CDATA[P.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Health-related quality of life in patients with amyotrophic lateral sclerosis]]></article-title>
<source><![CDATA[Neurología]]></source>
<year>2014</year>
<volume>29</volume>
<numero>1</numero>
<edition>English</edition>
<issue>1</issue>
<page-range>27-35</page-range></nlm-citation>
</ref>
<ref id="B44">
<label>44</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[SMITH]]></surname>
<given-names><![CDATA[Patricia Sherwood]]></given-names>
</name>
<name>
<surname><![CDATA[CROSSLEY]]></surname>
<given-names><![CDATA[Beverly]]></given-names>
</name>
<name>
<surname><![CDATA[GREENBERG]]></surname>
<given-names><![CDATA[Carey]]></given-names>
</name>
<name>
<surname><![CDATA[CARROLL]]></surname>
<given-names><![CDATA[Barbara]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Agreement among three quality of life measures in patients with ALS]]></article-title>
<source><![CDATA[Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders]]></source>
<year>2000</year>
<volume>1</volume>
<numero>4</numero>
<issue>4</issue>
<page-range>269-75</page-range></nlm-citation>
</ref>
<ref id="B45">
<label>45</label><nlm-citation citation-type="">
<person-group person-group-type="author">
<name>
<surname><![CDATA[UNGLIK]]></surname>
<given-names><![CDATA[Johanna]]></given-names>
</name>
<name>
<surname><![CDATA[BUNGENER]]></surname>
<given-names><![CDATA[Catherine]]></given-names>
</name>
<name>
<surname><![CDATA[DELGADILLO]]></surname>
<given-names><![CDATA[Daniel]]></given-names>
</name>
<name>
<surname><![CDATA[SALACHAS]]></surname>
<given-names><![CDATA[François]]></given-names>
</name>
<name>
<surname><![CDATA[PRADAT]]></surname>
<given-names><![CDATA[Pierre François]]></given-names>
</name>
<name>
<surname><![CDATA[BRUNETEAU]]></surname>
<given-names><![CDATA[Gaëlle]]></given-names>
</name>
<name>
<surname><![CDATA[LENGLET]]></surname>
<given-names><![CDATA[Timothée]]></given-names>
</name>
<name>
<surname><![CDATA[LE FORESTIER]]></surname>
<given-names><![CDATA[Nadine]]></given-names>
</name>
<name>
<surname><![CDATA[COURATIER]]></surname>
<given-names><![CDATA[Philippe]]></given-names>
</name>
<name>
<surname><![CDATA[VACHER]]></surname>
<given-names><![CDATA[Yannick]]></given-names>
</name>
<name>
<surname><![CDATA[LACOMBLEZ]]></surname>
<given-names><![CDATA[Lucette]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Émotions ressenties chez des patients atteints de sclérose latérale amyotrophique]]></article-title>
<source><![CDATA[Gériatrie et Psychologie Neuropsychiatrie du Vieillissement]]></source>
<year>2018</year>
<volume>16</volume>
<numero>4</numero>
<issue>4</issue>
</nlm-citation>
</ref>
<ref id="B46">
<label>46</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[VÁZQUEZ-COSTA]]></surname>
<given-names><![CDATA[J. F]]></given-names>
</name>
<name>
<surname><![CDATA[MARTÍNEZ-MOLINA]]></surname>
<given-names><![CDATA[M.]]></given-names>
</name>
<name>
<surname><![CDATA[FERNÁNDEZ-POLO]]></surname>
<given-names><![CDATA[M.]]></given-names>
</name>
<name>
<surname><![CDATA[FRASQUET-CARRERA]]></surname>
<given-names><![CDATA[M.]]></given-names>
</name>
<name>
<surname><![CDATA[SEVILLA-MANTECÓN]]></surname>
<given-names><![CDATA[T.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Análisis del trayecto y retraso diagnóstico de los pacientes con esclerosis lateral amiotrófica en la Comunidad Valenciana]]></article-title>
<source><![CDATA[Neurología]]></source>
<year>2021</year>
<volume>36</volume>
<numero>7</numero>
<issue>7</issue>
<page-range>504-13</page-range></nlm-citation>
</ref>
<ref id="B47">
<label>47</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[WICKS]]></surname>
<given-names><![CDATA[P.]]></given-names>
</name>
<name>
<surname><![CDATA[ABRAHAMS]]></surname>
<given-names><![CDATA[D.]]></given-names>
</name>
<name>
<surname><![CDATA[HEJDA-FORDE]]></surname>
<given-names><![CDATA[S.]]></given-names>
</name>
<name>
<surname><![CDATA[LEIGH]]></surname>
<given-names><![CDATA[P. N.]]></given-names>
</name>
<name>
<surname><![CDATA[GOLDSTEIN]]></surname>
<given-names><![CDATA[L. H.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Prevalence of depression in a 12-month consecutive sample of patients with ALS]]></article-title>
<source><![CDATA[European journal of neurology]]></source>
<year>2007</year>
<volume>14</volume>
<numero>9</numero>
<issue>9</issue>
<page-range>993-1001</page-range></nlm-citation>
</ref>
<ref id="B48">
<label>48</label><nlm-citation citation-type="book">
<person-group person-group-type="author">
<name>
<surname><![CDATA[ZIBECCHI]]></surname>
<given-names><![CDATA[Carla]]></given-names>
</name>
</person-group>
<source><![CDATA[(Cómo se cuida en Argentina?: Definiciones y experiencias sobre el cuidado de niños y niñas]]></source>
<year>2014</year>
<publisher-name><![CDATA[Equipo Latinoamericano de Justicia y Género (ELA)]]></publisher-name>
</nlm-citation>
</ref>
</ref-list>
</back>
</article>
