Receiving the news of a diagnosis of motor neuron disease: What does it take to make it better?

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usa-input-error-message selection-validation-message"> Name must be less than 100 characters </div> </div> <div class="action-panel-control-wrap existing-collections-controls"> <label for="collections-action-panel-add-to-existing" class="action-panel-label"> Choose a collection: </label> <select id="collections-action-panel-add-to-existing" class="action-panel-selector collections-action-add-to-existing" data-ga-category="save_share" data-ga-action="select_collection" data-ga-label="($('#collections-action-add-to-existing').val() === 'Favorites') ? 'Favorites' : 'non_favorites_collection'"> </select> <div class="collections-retry-load-on-error usa-input-error-message selection-validation-message"> Unable to load your collection due to an error<br> <a href="#">Please try again</a> </div> </div> </div> <div class="action-panel-actions"> <button class="action-panel-submit" type="submit" data-loading-label="Adding..." data-pinger-ignore data-ga-category="save_share" data-ga-action="collections" data-ga-label="add"> Add </button> <button class="action-panel-cancel" aria-label="Close 'Add to Collections' panel" ref="linksrc=close_collections_panel" aria-controls="collections-action-panel" aria-expanded="false" data-ga-category="save_share" data-ga-action="collections" data-ga-label="cancel"> Cancel </button> </div> </form> </div> </div> <div id="bibliography-action-panel" class="bibliography-action-panel action-panel in-progress-dots-panel" aria-hidden="true" data-bibliography-open-panel-enabled="false" data-bibliography-open-panel-url-hash="#open-bibliography-panel"> <div class="inner-wrap"> <h3 class="action-panel-heading"> Add to My Bibliography </h3> <form id="bibliography-action-panel-form" class="bibliography-action-panel-form action-panel-content action-form action-panel-smaller-selectors" data-add-to-bibliography-max-amount="100" data-add-to-bibliography-batch-size="10" data-bibliography-delegates-url="/list-bibliography-delegates/" data-add-to-bibliography-url="/add-to-bibliography/" data-get-article-ids-by-search-url="/get-article-ids-by-search/" data-mybib-root-url="https://www.ncbi.nlm.nih.gov/myncbi/collections/mybibliography/"> <input type="hidden" name="csrfmiddlewaretoken" value="qCxruFyDTPw7S91QvVsSnbJnJ2Xrsy9djx6vAWmYHMJT3IUxa9Hr1zDfZ0yVGs32"> <div class="action-panel-control-wrap bibliographies-controls"> <div class="choice-group"> <ul class="bibliographies-action-add radio-group-items"> <li> <input name="bibliography" id="my-bibliography" class="my-bibliography" type="radio" checked/> <label for="my-bibliography">My Bibliography</label> </li> </ul> </div> </div> <div class="bibliographies-retry-load-on-error usa-input-error-message selection-validation-message"> Unable to load your delegates due to an error<br> <a href="#">Please try again</a> </div> <div class="action-panel-actions"> <button class="action-panel-submit" type="submit" data-loading-label="Adding..." data-pinger-ignore> Add </button> <button class="action-panel-cancel" aria-label="Close 'Add to bibliography' panel" ref="linksrc=close_bibliography_panel" aria-controls="bibliography-action-panel" aria-expanded="false" data-ga-category="save_share" data-ga-action="mybib" data-ga-label="cancel"> Cancel </button> </div> </form> </div> </div> <div id="saved-search-action-panel" class="saved-search-action-panel action-panel " aria-hidden="true" data-saved-search-open-panel-enabled="false" data-saved-search-open-panel-url-hash="#open-saved-search-panel"> <div class="inner-wrap"> <h2 class="action-panel-heading"> Your saved search </h2> <form id="saved-search-action-panel-form" class="saved-search-action-panel-form action-panel-content action-form" data-create-saved-search-url="/create-saved-search/" data-try-search-terms-url="/try-search-term/" data-saved-search-root-url="https://www.ncbi.nlm.nih.gov/myncbi/searches/"> <input type="hidden" name="csrfmiddlewaretoken" value="qCxruFyDTPw7S91QvVsSnbJnJ2Xrsy9djx6vAWmYHMJT3IUxa9Hr1zDfZ0yVGs32"> <div class="action-panel-control-wrap"> <label for="saved-search-name" class="action-panel-label saved-search-name-label required-field-asterisk"> Name of saved search: </label> <input maxlength="200" type="text" name="saved-search-name" id="saved-search-name" class="saved-search-name" value="" required pattern="[^"&=<>\/]*" title="The following characters are not allowed in the Name field: "&=<>/"> </div> <div class="action-panel-control-wrap"> <label for="saved-search-term" class="action-panel-label required-field-asterisk"> Search terms: </label> <textarea name="saved-search-term" id="saved-search-term" class="saved-search-term" required></textarea> </div> <div class="test-search-term-wrap"> <a href="#" class="try-search-term">Test search terms</a> </div> <div class="choice-group action-panel-extra-margin-top"> <span class="action-panel-label" id="fieldset-label"> Would you like email updates of new search results? </span> <fieldset id="saved-search-alert" aria-describedby="fieldset-label"> <legend class="usa-sr-only">Saved Search Alert Radio Buttons</legend> <ul class="radio-group-items"> <li> <input type="radio" id="saved-search-alert-yes" class="saved-search-alert-yes" name="saved-search-alert" value="yes" checked> <label for="saved-search-alert-yes" class="action-panel-label">Yes</label> </li> <li> <input aria-label="No radio input" type="radio" id="saved-search-alert-no" class="saved-search-alert-no" name="saved-search-alert" value="no"> <label for="saved-search-alert-no" class="action-panel-label">No</label> </li> </ul> </fieldset> </div> <div class="alert-schedule-wrap"> <div class="action-panel-control-wrap"> <label class="action-panel-label"> Email: </label> <span aria-label="Email address" id="saved-search-email" class="action-panel-label"><span class="action-panel-label-bold"></span> (<a class="myncbi-account-settings" href="https://www.ncbi.nlm.nih.gov/account/settings/">change</a>)</span> </div> <div class="action-panel-control-wrap action-panel-extra-margin-top"> <label for="saved-search-frequency" class="action-panel-label"> Frequency: </label> <select id="saved-search-frequency" class="no-border-panel-selector saved-search-frequency"> <option value="monthly">Monthly</option> <option value="weekly">Weekly</option> <option value="daily">Daily</option> </select> </div> <div class="action-panel-control-wrap saved-search-monthly-additional"> <label for="saved-search-monthly-on-day" class="action-panel-label"> Which day? </label> <select id="saved-search-monthly-on-day" class="no-border-panel-selector"> <option value="Sunday">The first Sunday</option> <option value="Monday">The first Monday</option> <option value="Tuesday">The first Tuesday</option> <option value="Wednesday">The first Wednesday</option> <option value="Thursday">The first Thursday</option> <option value="Friday">The first Friday</option> <option value="Saturday">The first Saturday</option> <option value="day">The first day</option> <option value="weekday">The first weekday</option> </select> </div> <div class="action-panel-control-wrap saved-search-weekly-additional"> <label for="saved-search-weekly-on-day" class="action-panel-label"> Which day? </label> <select id="saved-search-weekly-on-day" class="no-border-panel-selector saved-search-weekly-on-day"> <option value="Sunday">Sunday</option> <option value="Monday">Monday</option> <option value="Tuesday">Tuesday</option> <option value="Wednesday">Wednesday</option> <option value="Thursday">Thursday</option> <option value="Friday">Friday</option> <option value="Saturday">Saturday</option> </select> </div> <div class="action-panel-control-wrap"> <label for="saved-search-report" class="action-panel-label"> Report format: </label> <select id="saved-search-report" class="no-border-panel-selector saved-search-report"> <option value="DocSum">Summary</option> <option value="DocSumText">Summary (text)</option> <option value="Abstract">Abstract</option> <option value="AbstractText">Abstract (text)</option> <option value="MEDLINE">PubMed</option> </select> </div> <div class="action-panel-control-wrap"> <label for="saved-search-amount" class="action-panel-label"> Send at most: </label> <select id="saved-search-amount" class="no-border-panel-selector saved-search-amount"> <option value="1">1 item</option> <option value="5" selected>5 items</option> <option value="10">10 items</option> <option value="20">20 items</option> <option value="50">50 items</option> <option value="100">100 items</option> <option value="200">200 items</option> </select> </div> <div> <input type="checkbox" id="saved-search-send-if-no-result" class="saved-search-send-if-no-result" name="saved-search-send-if-no-result"> <label for="saved-search-send-if-no-result" class="action-panel-label smaller-checkbox"> Send even when there aren't any new results </label> </div> <div class="action-panel-control-wrap option-text-in-email-wrap"> <label for="saved-search-email-text" class="action-panel-label"> Optional text in email: </label> <textarea name="saved-search-email-text" id="saved-search-email-text" class="saved-search-email-text"></textarea> </div> </div> <div class="action-panel-actions"> <button class="action-panel-submit" type="submit" data-loading-label="Saving..." data-ga-category="save_share" data-ga-action="alert" data-ga-label="save"> Save </button> <button class="action-panel-cancel" aria-label="Close 'Your saved search' panel" ref="linksrc=close_saved_search_panel" aria-controls="saved-search-action-panel" aria-expanded="false" data-ga-category="save_share" data-ga-action="alert" data-ga-label="cancel"> Cancel </button> </div> </form> </div> </div> <div id="citation-manager-action-panel" class="citation-manager-action-panel action-panel" aria-hidden="true"> <div class="inner-wrap"> <h2 class="action-panel-heading"> Create a file for external citation management software </h2> <form id="citation-manager-action-panel-form" class="action-panel-content action-form" action="/results-export-ids/" data-by-search-action="/results-export-search-data/" data-by-ids-action="/results-export-ids/" method="post" data-by-search-method="post" data-by-ids-method="post"> <input type="hidden" name="csrfmiddlewaretoken" value="qCxruFyDTPw7S91QvVsSnbJnJ2Xrsy9djx6vAWmYHMJT3IUxa9Hr1zDfZ0yVGs32"> <input name="results-format" type="hidden" value="pubmed"/> <div class="action-panel-actions"> <button class="action-panel-submit" type="submit" data-loading-label="Sending..." data-ga-category="save_share" data-ga-action="citation_manager" data-ga-label="save"> Create file </button> <button class="action-panel-cancel" aria-label="Close 'Send citations to citation manager' panel" ref="linksrc=close_citation_manager_panel" aria-controls="citation-manager-action-panel" aria-expanded="false" data-ga-category="save_share" data-ga-action="citation_manager" data-ga-label="cancel"> Cancel </button> </div> </form> </div> </div> <div id="rss-action-panel" class="rss-action-panel action-panel " aria-hidden="true"> <div class="inner-wrap"> <h2 class="action-panel-heading"> Your RSS Feed </h2> <form id="rss-action-panel-form" class="rss-action-panel-form action-panel-content action-form" data-create-rss-feed-url="/create-rss-feed-url/" data-search-form-term-value=""> <input type="hidden" name="csrfmiddlewaretoken" value="qCxruFyDTPw7S91QvVsSnbJnJ2Xrsy9djx6vAWmYHMJT3IUxa9Hr1zDfZ0yVGs32"> <div class="action-panel-control-wrap"> <label for="rss-name" class="action-panel-label required-field-asterisk"> Name of RSS Feed: </label> <input maxlength="200" placeholder="Name" type="text" name="rss-name" id="rss-name" class="rss-name" value='' required pattern="[^"&=<>\/]*" title="The following characters are not allowed in the Name field: "&=<>/"> </div> <div class="rss-limit-wrap"> <div class="action-panel-control-wrap action-panel-extra-margin-top"> <label for="rss-limit" class="action-panel-label"> Number of items displayed: </label> <select id="rss-limit" class="no-border-panel-selector rss-limit"> <option value="5">5</option> <option value="10">10</option> <option value="15" selected="selected">15</option> <option value="20">20</option> <option value="50">50</option> <option value="100">100</option> </select> </div> </div> <div class="action-panel-actions"> <button class="action-panel-submit" type="submit" data-loading-label="Creating..." data-ga-category="save_share" data-ga-action="alert" data-ga-label="save"> Create RSS </button> <button class="action-panel-cancel" aria-label="Close 'Your RSS' panel" ref="linksrc=close_rss_panel" aria-controls="rss-action-panel" aria-expanded="false" data-ga-category="save_share" data-ga-action="alert" data-ga-label="cancel"> Cancel </button> </div> <div class="action-panel-control-wrap rss-link-copy-wrap"> <label for="rss-link" class="usa-sr-only">RSS Link</label> <input placeholder="Your RSS Feed Link" type="text" name="rss-link" id="rss-link" class="rss-link" title="RSS Link"> <button type="button" disabled class="rss-link-copy-button disabled" data-ga-category="save_share" data-ga-action="rss" data-ga-label="copy"> Copy </button> </div> </form> </div> </div> </div> </div> <div class="article-page" id="article-page" data-article-pmid="26609553"> <aside class="page-sidebar"> <div class="inner-wrap"> <div class="full-text-links"> <div class="full-view"> <h3 class="title"> Full text links </h3> <div class="full-text-links-list"> <a class="link-item dialog-focus" href="https://www.tandfonline.com/doi/10.3109/21678421.2015.1111907?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub 0pubmed" target="_blank" rel="noopener" ref="linksrc=fulltextorjournal_fulltext&is_pmc=False&PrId=4487&itool=Abstract-def&log$=linkouticon&uid=26609553&db=pubmed&nlmid=101587185" title="See full text options at Atypon" data-ga-category="full_text" data-ga-action="Atypon" data-ga-label="26609553" ><img src="https://cdn.ncbi.nlm.nih.gov/corehtml/query/egifs/https:--www.tandfonline.com-pb-assets-tandf-logos-tf_pubmed_fulltext_icon.png" alt="Atypon full text link"><span class="text"> Atypon </span></a> </div> </div> <div class="short-view"> <a href="#" class="full-text-links-button full-text-links-dialog-trigger"> Full text links </a> </div> </div> <div class="actions-buttons sidebar"><h3 class="title">Actions</h3><div class="inner-wrap"><button class="citation-button citation-dialog-trigger" aria-label="Open dialog with citation text in different styles" 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data-ga-label="non_favorties_collection"><div class="collections-new-name-too-long usa-input-error-message selection-validation-message"> Name must be less than 100 characters </div></div><div class="action-panel-control-wrap existing-collections-controls"><label for="collections-action-dialog-add-to-existing" class="action-panel-label"> Choose a collection: </label><select id="collections-action-dialog-add-to-existing" class="action-panel-selector collections-action-add-to-existing" data-ga-category="collections_button" data-ga-action="select_collection" data-ga-label="($('.collections-action-add-to-existing').val() === 'Favorites') ? 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aria-controls="full-view-journal" aria-expanded="false" aria-label="Toggle dropdown menu for journal Amyotrophic lateral sclerosis & frontotemporal degeneration" data-pinger-ignore> Amyotroph Lateral Scler Frontotemporal Degener </button><div id="full-view-journal" class="journal-actions-dropdown dropdown dropdown-container" hidden aria-label="Dropdown menu for journal Amyotrophic lateral sclerosis & frontotemporal degeneration"><div class="title">Actions</div><div class="content"><ul class="journal-actions-links"><li><a class="search-in-pubmed-link dropdown-block-link" href="/?term=%22Amyotroph+Lateral+Scler+Frontotemporal+Degener%22%5Bjour%5D&sort=date&sort_order=desc" data-href="/?term=%22Amyotroph+Lateral+Scler+Frontotemporal+Degener%22%5Bjour%5D&sort=date&sort_order=desc" ref="linksrc=search_in_pubmed_journal_name_link&journal_abbrev=Amyotroph Lateral Scler Frontotemporal Degener" data-ga-category="search" data-ga-action="journal_link" data-ga-label="Amyotroph Lateral Scler Frontotemporal Degener"> Search in PubMed </a></li><li><a class="search-in-nlm-catalog-link dropdown-block-link" ref ="linksrc=search_in_nlm_catalog_link" href="https://www.ncbi.nlm.nih.gov/nlmcatalog?term=%22Amyotroph+Lateral+Scler+Frontotemporal+Degener%22%5BTitle+Abbreviation%5D" data-ga-category="search_catalog" data-ga-action="journal_link" data-ga-label="Amyotroph Lateral Scler Frontotemporal Degener"> Search in NLM Catalog </a></li><li><a class="add-to-search-link dropdown-block-link" ref ="linksrc=add_to_search_link" role="button" data-search-term='"Amyotroph Lateral Scler Frontotemporal Degener"[jour]' data-ga-category="search" data-ga-action="add_to_search" data-ga-label='"Amyotroph Lateral Scler Frontotemporal Degener"[jour]' href="#"> Add to Search </a></li></ul></div></div></div><span class="period">. </span><span class="cit">2016;17(3-4):168-78.</span> </div> <span class="citation-doi"> doi: 10.3109/21678421.2015.1111907. </span> <span class="secondary-date"> Epub 2015 Nov 26. </span> </div> <h1 class="heading-title"> Receiving the news of a diagnosis of motor neuron disease: What does it take to make it better? </h1> <div class="inline-authors"> <div class="authors"> <div class="authors-list"> <span class="authors-list-item "><a class="full-name" href="/?term=Aoun+SM&cauthor_id=26609553" ref="linksrc=author_name_link" data-ga-category="search" data-ga-action="author_link" data-ga-label="Samar M Aoun">Samar M Aoun</a><sup class="affiliation-links"><span class="author-sup-separator"> </span><a class="affiliation-link" title="a School of Nursing, Midwifery and Paramedicine ." href="#full-view-affiliation-1" ref="linksrc=author_aff"> 1 </a></sup><span class="comma">, </span></span><span class="authors-list-item "><a class="full-name" href="/?term=Breen+LJ&cauthor_id=26609553" ref="linksrc=author_name_link" data-ga-category="search" data-ga-action="author_link" data-ga-label="Lauren J Breen">Lauren J Breen</a><sup class="affiliation-links"><span class="author-sup-separator"> </span><a class="affiliation-link" title="b School of Psychology and Speech Pathology Faculty of Health Sciences , Curtin University , Perth , Western Australia ." href="#full-view-affiliation-2" ref="linksrc=author_aff"> 2 </a></sup><span class="comma">, </span></span><span class="authors-list-item "><a class="full-name" href="/?term=Howting+D&cauthor_id=26609553" ref="linksrc=author_name_link" data-ga-category="search" data-ga-action="author_link" data-ga-label="Denise Howting">Denise Howting</a><sup class="affiliation-links"><span class="author-sup-separator"> </span><a class="affiliation-link" title="a School of Nursing, Midwifery and Paramedicine ." href="#full-view-affiliation-1" ref="linksrc=author_aff"> 1 </a></sup><span class="comma">, </span></span><span class="authors-list-item "><a class="full-name" href="/?term=Edis+R&cauthor_id=26609553" ref="linksrc=author_name_link" data-ga-category="search" data-ga-action="author_link" data-ga-label="Robert Edis">Robert Edis</a><sup class="affiliation-links"><span class="author-sup-separator"> </span><a class="affiliation-link" title="c Royal Perth Hospital, Shenton Park Campus , Shenton Park , Australia ." href="#full-view-affiliation-3" ref="linksrc=author_aff"> 3 </a></sup><span class="comma">, </span></span><span class="authors-list-item "><a class="full-name" href="/?term=Oliver+D&cauthor_id=26609553" ref="linksrc=author_name_link" data-ga-category="search" data-ga-action="author_link" data-ga-label="David Oliver">David Oliver</a><sup class="affiliation-links"><span class="author-sup-separator"> </span><a class="affiliation-link" title="d Wisdom Hospice and University of Kent , Rochester , UK ." href="#full-view-affiliation-4" ref="linksrc=author_aff"> 4 </a></sup><span class="comma">, </span></span><span class="authors-list-item "><a class="full-name" href="/?term=Henderson+R&cauthor_id=26609553" ref="linksrc=author_name_link" data-ga-category="search" data-ga-action="author_link" data-ga-label="Robert Henderson">Robert Henderson</a><sup class="affiliation-links"><span class="author-sup-separator"> </span><a class="affiliation-link" title="e Royal Brisbane & Women's Hospital , Herston , Queensland ." href="#full-view-affiliation-5" ref="linksrc=author_aff"> 5 </a></sup><span class="comma">, </span></span><span class="authors-list-item "><a class="full-name" href="/?term=O%27Connor+M&cauthor_id=26609553" ref="linksrc=author_name_link" data-ga-category="search" data-ga-action="author_link" data-ga-label="Margaret O'Connor">Margaret O'Connor</a><sup class="affiliation-links"><span class="author-sup-separator"> </span><a class="affiliation-link" title="f Faculty of Health, Arts & Design, Swinburne University Melbourne , Victoria ." href="#full-view-affiliation-6" ref="linksrc=author_aff"> 6 </a></sup><span class="comma">, </span></span><span class="authors-list-item "><a class="full-name" href="/?term=Harris+R&cauthor_id=26609553" ref="linksrc=author_name_link" data-ga-category="search" data-ga-action="author_link" data-ga-label="Rodney Harris">Rodney Harris</a><sup class="affiliation-links"><span class="author-sup-separator"> </span><a class="affiliation-link" title="g MND Victoria , Canterbury , Victoria , and." href="#full-view-affiliation-7" ref="linksrc=author_aff"> 7 </a></sup><span class="comma">, </span></span><span class="authors-list-item "><a class="full-name" href="/?term=Birks+C&cauthor_id=26609553" ref="linksrc=author_name_link" data-ga-category="search" data-ga-action="author_link" data-ga-label="Carol Birks">Carol Birks</a><sup class="affiliation-links"><span class="author-sup-separator"> </span><a class="affiliation-link" title="h MND Australia , Gladesville , Australia." href="#full-view-affiliation-8" ref="linksrc=author_aff"> 8 </a></sup></span> </div> </div> </div> <div class="short-article-details"> Affiliations <button class="more-details" id="toggle-authors" data-alt-text="Collapse" aria-controls="expanded-authors" aria-expanded="false" data-pinger-ignore data-fetch-url="/26609553/long-authors/" data-id-prefix=""> <span class="title"> Expand </span> </button> </div> <div class="extended-article-details" id="expanded-authors" aria-hidden="true"> <div class="expanded-authors" id="full-view-expanded-authors"> <div class="affiliations"> <h3 class="title"> Affiliations </h3> <ul class="item-list"> <li data-affiliation-id="full-view-affiliation-1" id="full-view-affiliation-1" ><sup class="key">1</sup> a School of Nursing, Midwifery and Paramedicine .</li> <li data-affiliation-id="full-view-affiliation-2" id="full-view-affiliation-2" ><sup class="key">2</sup> b School of Psychology and Speech Pathology Faculty of Health Sciences , Curtin University , Perth , Western Australia .</li> <li data-affiliation-id="full-view-affiliation-3" id="full-view-affiliation-3" ><sup class="key">3</sup> c Royal Perth Hospital, Shenton Park Campus , Shenton Park , Australia .</li> <li data-affiliation-id="full-view-affiliation-4" id="full-view-affiliation-4" ><sup class="key">4</sup> d Wisdom Hospice and University of Kent , Rochester , UK .</li> <li data-affiliation-id="full-view-affiliation-5" id="full-view-affiliation-5" ><sup class="key">5</sup> e Royal Brisbane & Women's Hospital , Herston , Queensland .</li> <li data-affiliation-id="full-view-affiliation-6" id="full-view-affiliation-6" ><sup class="key">6</sup> f Faculty of Health, Arts & Design, Swinburne University Melbourne , Victoria .</li> <li data-affiliation-id="full-view-affiliation-7" id="full-view-affiliation-7" ><sup class="key">7</sup> g MND Victoria , Canterbury , Victoria , and.</li> <li data-affiliation-id="full-view-affiliation-8" id="full-view-affiliation-8" ><sup class="key">8</sup> h MND Australia , Gladesville , Australia.</li> </ul> </div> </div> </div> <ul class="identifiers" id="full-view-identifiers"> <li> <span class="identifier pubmed"> <span class="id-label"> PMID: </span> <strong class="current-id" title="PubMed ID">26609553</strong> </span> </li> <li> <span class="identifier doi"> <span class="id-label"> DOI: </span> <a class="id-link" target="_blank" rel="noopener" ref="linksrc=article_id_link&article_id=10.3109/21678421.2015.1111907&id_type=DOI" href="https://doi.org/10.3109/21678421.2015.1111907" data-ga-category="full_text" data-ga-action="DOI" > 10.3109/21678421.2015.1111907 </a> </span> </li> </ul> <div class="in-clipboard-label " hidden> Item in Clipboard </div> </div> <div class="short-view" id="short-view-heading"> <h1 class="heading-title"> Receiving the news of a diagnosis of motor neuron disease: What does it take to make it better? </h1> <div class="short-citation"> <span class="authors-list"> <span class="authors-list-item "><span class="full-name">Samar M Aoun</span><span class="citation-separator"> et al.</span></span> </span> <span class="citation-journal"> Amyotroph Lateral Scler Frontotemporal Degener<span class="citation-separator">.</span> </span> <span class="date"> <span class="citation-year">2016</span><span class="citation-separator">.</span> </span> </div> <div class="more-article-details-section with-display-settings"> <button class="more-article-details" id="toggle-article-details" data-alt-text="Hide details" ref="linksrc=toggle_article_details" aria-controls="full-article-details" aria-expanded="false" data-fetch-url="/26609553/long-authors/" data-id-prefix=""> <span class="title">Show details</span> </button> <div class="display-options" data-format-key="format" data-default-format-value="abstract" data-current-format-value="abstract" role="region"> <button class="trigger usa-button" title="Change format" data-ga-category="display_options" data-ga-action="display_options_dialog"> <span class="button-label">Display options</span> </button> <div class="dropdown" hidden> <div class="title"> Display options </div> <div class="content"> <div class="format-container"> <span class="option-label"> Format </span> <select name="format" data-initial-value="abstract" aria-label="Display format" id="mobile-display-format"> <option value="abstract">Abstract</option> <option value="pubmed">PubMed</option> <option value="pmid">PMID</option> </select> </div> </div> </div> </div> </div> <div class="extended-article-details" id="full-article-details" aria-hidden="true"> <div class="article-citation"> <div class="article-source"> <div class="journal-actions dropdown-block"><button id="short-view-journal-trigger" class="journal-actions-trigger trigger" ref="linksrc=journal_actions_btn" title="Amyotrophic lateral sclerosis & frontotemporal degeneration" tabindex="0" aria-controls="short-view-journal" aria-expanded="false" aria-label="Toggle dropdown menu for journal Amyotrophic lateral sclerosis & frontotemporal degeneration" data-pinger-ignore> Amyotroph Lateral Scler Frontotemporal Degener </button><div id="short-view-journal" class="journal-actions-dropdown dropdown dropdown-container" hidden 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data-ga-category="search" data-ga-action="author_link" data-ga-label="Samar M Aoun">Samar M Aoun</a><sup class="affiliation-links"><span class="author-sup-separator"> </span><a class="affiliation-link" title="a School of Nursing, Midwifery and Paramedicine ." href="#short-view-affiliation-1" ref="linksrc=author_aff"> 1 </a></sup><span class="comma">, </span></span><span class="authors-list-item "><a class="full-name" href="/?term=Breen+LJ&cauthor_id=26609553" ref="linksrc=author_name_link" data-ga-category="search" data-ga-action="author_link" data-ga-label="Lauren J Breen">Lauren J Breen</a><sup class="affiliation-links"><span class="author-sup-separator"> </span><a class="affiliation-link" title="b School of Psychology and Speech Pathology Faculty of Health Sciences , Curtin University , Perth , Western Australia ." href="#short-view-affiliation-2" ref="linksrc=author_aff"> 2 </a></sup><span class="comma">, </span></span><span class="authors-list-item "><a class="full-name" href="/?term=Howting+D&cauthor_id=26609553" ref="linksrc=author_name_link" data-ga-category="search" data-ga-action="author_link" data-ga-label="Denise Howting">Denise Howting</a><sup class="affiliation-links"><span class="author-sup-separator"> </span><a class="affiliation-link" title="a School of Nursing, Midwifery and Paramedicine ." href="#short-view-affiliation-1" ref="linksrc=author_aff"> 1 </a></sup><span class="comma">, </span></span><span class="authors-list-item "><a class="full-name" href="/?term=Edis+R&cauthor_id=26609553" ref="linksrc=author_name_link" data-ga-category="search" data-ga-action="author_link" data-ga-label="Robert Edis">Robert Edis</a><sup class="affiliation-links"><span class="author-sup-separator"> </span><a class="affiliation-link" title="c Royal Perth Hospital, Shenton Park Campus , Shenton Park , Australia ." href="#short-view-affiliation-3" ref="linksrc=author_aff"> 3 </a></sup><span class="comma">, </span></span><span class="authors-list-item "><a class="full-name" href="/?term=Oliver+D&cauthor_id=26609553" ref="linksrc=author_name_link" data-ga-category="search" data-ga-action="author_link" data-ga-label="David Oliver">David Oliver</a><sup class="affiliation-links"><span class="author-sup-separator"> </span><a class="affiliation-link" title="d Wisdom Hospice and University of Kent , Rochester , UK ." href="#short-view-affiliation-4" ref="linksrc=author_aff"> 4 </a></sup><span class="comma">, </span></span><span class="authors-list-item "><a class="full-name" href="/?term=Henderson+R&cauthor_id=26609553" ref="linksrc=author_name_link" data-ga-category="search" data-ga-action="author_link" data-ga-label="Robert Henderson">Robert Henderson</a><sup class="affiliation-links"><span class="author-sup-separator"> </span><a class="affiliation-link" title="e Royal Brisbane & Women's Hospital , Herston , Queensland ." href="#short-view-affiliation-5" ref="linksrc=author_aff"> 5 </a></sup><span class="comma">, </span></span><span class="authors-list-item "><a class="full-name" href="/?term=O%27Connor+M&cauthor_id=26609553" ref="linksrc=author_name_link" data-ga-category="search" data-ga-action="author_link" data-ga-label="Margaret O'Connor">Margaret O'Connor</a><sup class="affiliation-links"><span class="author-sup-separator"> </span><a class="affiliation-link" title="f Faculty of Health, Arts & Design, Swinburne University Melbourne , Victoria ." href="#short-view-affiliation-6" ref="linksrc=author_aff"> 6 </a></sup><span class="comma">, </span></span><span class="authors-list-item "><a class="full-name" href="/?term=Harris+R&cauthor_id=26609553" ref="linksrc=author_name_link" data-ga-category="search" data-ga-action="author_link" data-ga-label="Rodney Harris">Rodney Harris</a><sup class="affiliation-links"><span class="author-sup-separator"> </span><a class="affiliation-link" title="g MND Victoria , Canterbury , Victoria , and." href="#short-view-affiliation-7" ref="linksrc=author_aff"> 7 </a></sup><span class="comma">, </span></span><span class="authors-list-item "><a class="full-name" href="/?term=Birks+C&cauthor_id=26609553" ref="linksrc=author_name_link" data-ga-category="search" data-ga-action="author_link" data-ga-label="Carol Birks">Carol Birks</a><sup class="affiliation-links"><span class="author-sup-separator"> </span><a class="affiliation-link" title="h MND Australia , Gladesville , Australia." href="#short-view-affiliation-8" ref="linksrc=author_aff"> 8 </a></sup></span> </div> </div> <div class="affiliations"> <h3 class="title"> Affiliations </h3> <ul class="item-list"> <li data-affiliation-id="short-view-affiliation-1" id="short-view-affiliation-1" ><sup class="key">1</sup> a School of Nursing, Midwifery and Paramedicine .</li> <li data-affiliation-id="short-view-affiliation-2" id="short-view-affiliation-2" ><sup class="key">2</sup> b School of Psychology and Speech Pathology Faculty of Health Sciences , Curtin University , Perth , Western Australia .</li> <li data-affiliation-id="short-view-affiliation-3" id="short-view-affiliation-3" ><sup class="key">3</sup> c Royal Perth Hospital, Shenton Park Campus , Shenton Park , Australia .</li> <li data-affiliation-id="short-view-affiliation-4" id="short-view-affiliation-4" ><sup class="key">4</sup> d Wisdom Hospice and University of Kent , Rochester , UK .</li> <li data-affiliation-id="short-view-affiliation-5" id="short-view-affiliation-5" ><sup class="key">5</sup> e Royal Brisbane & Women's Hospital , Herston , Queensland .</li> <li data-affiliation-id="short-view-affiliation-6" id="short-view-affiliation-6" ><sup class="key">6</sup> f Faculty of Health, Arts & Design, Swinburne University Melbourne , Victoria .</li> <li data-affiliation-id="short-view-affiliation-7" id="short-view-affiliation-7" ><sup class="key">7</sup> g MND Victoria , Canterbury , Victoria , and.</li> <li data-affiliation-id="short-view-affiliation-8" id="short-view-affiliation-8" ><sup class="key">8</sup> h MND Australia , Gladesville , Australia.</li> </ul> </div> </div> <ul class="identifiers" id="short-view-identifiers"> <li> <span class="identifier pubmed"> <span class="id-label"> PMID: </span> <strong class="current-id" title="PubMed ID">26609553</strong> </span> </li> <li> <span class="identifier doi"> <span class="id-label"> DOI: </span> <a class="id-link" target="_blank" rel="noopener" ref="linksrc=article_id_link&article_id=10.3109/21678421.2015.1111907&id_type=DOI" href="https://doi.org/10.3109/21678421.2015.1111907" data-ga-category="full_text" data-ga-action="DOI" > 10.3109/21678421.2015.1111907 </a> </span> </li> </ul> <div class="in-clipboard-label " hidden> Item in Clipboard </div> </div> </div> </header> <div class="actions-buttons inline"><div class="inner-wrap"><button class="full-text-links-button full-text-links-dialog-trigger" title="Open dialog with full text links" ref="linksrc=full_text_links"> Full text links </button><button class="citation-button citation-dialog-trigger" aria-label="Open dialog with citation text in different styles" data-ga-category="save_share" data-ga-action="cite" data-ga-label="open" data-all-citations-url="/26609553/citations/" data-citation-style="nlm" data-pubmed-format-link="/26609553/export/"><span class="button-label">Cite</span></button><button class="more-actions-button more-actions-dialog-trigger" title="Open dialog with more actions to take" ref="linksrc=more_actions_btn"></button><div class="display-options" data-format-key="format" data-default-format-value="abstract" data-current-format-value="abstract" role="region"><button class="trigger usa-button" title="Change format" data-ga-category="display_options" data-ga-action="display_options_dialog"><span class="button-label">Display options</span></button><div class="dropdown" hidden><div class="title"> Display options </div><div class="content"><div class="format-container"><span class="option-label"> Format </span><select name="format" data-initial-value="abstract" aria-label="Display format" id="inline-actions-display-format"><option value="abstract">Abstract</option><option value="pubmed">PubMed</option><option value="pmid">PMID</option></select></div></div></div></div></div></div> <div class="abstract" id="abstract"> <h2 class="title"> Abstract </h2> <div class="abstract-content selected" id="eng-abstract"> <p> Our objectives were to identify the experiences of people with MND in receiving the diagnosis and to determine which aspects of breaking this bad news were associated with greater satisfaction with the way the diagnosis was delivered to them. An anonymous postal survey was facilitated by all MND associations in Australia, in 2014, and centred on the SPIKES protocol for communicating bad news. Of the patients (n = 248, response rate 29%), 36% were dissatisfied with the delivery of the diagnosis and gave low ratings on the ability/skills of their neurologists to deliver the diagnosis. It was evident that the longer the patients spent with their neurologists during breaking such bad news, the more they were satisfied and the higher they rated the neurologists' abilities/skills. The largest significant differences between neurologists rated as having high or low skills in delivering the diagnosis were in four domains: 1) responding empathically to the feelings of patient/family; 2) sharing the information and suggesting realistic goals; 3) exploring what patient/family are expecting or hoping for; and 4) making a plan and following through. In conclusion, with over one-third of patients dissatisfied with their experience, there is room for improvement in the practice of neurologists in specified areas that could form the basis for changing practice, and the development of standards and protocols likely to have implications at the international level. </p> </div> <p> <strong class="sub-title"> Keywords: </strong> MND diagnosis; MND/ALS; SPIKES protocol; breaking bad news; empathy. </p> </div> <p class="disclaimer" id="disclaimer"> <a href="/disclaimer/" target="_blank" data-ga-category="literature_resources" data-ga-action="disclaimer_link" data-ga-label="under_abstract">PubMed Disclaimer</a> </p> <div class="similar-articles" id="similar"> <h2 class="title"> Similar articles </h2> <ul class="articles-list" id="similar-articles-list"> <li class="full-docsum"> <div class="docsum-content" style="display:inline;"> <a class="docsum-title" href="/27423623/" ref="article_id=27423623&linksrc=similar_articles_link&ordinalpos=1" data-ga-category="similar_article" data-ga-action="27423623" data-ga-label=""> Breaking the news of a diagnosis of motor neurone disease: A national survey of neurologists' perspectives. </a> <div class="docsum-citation full-citation"> <span class="docsum-authors full-authors">Aoun SM, Breen LJ, Edis R, Henderson RD, Oliver D, Harris R, Howting D, O'Connor M, Birks C.</span> <span class="docsum-authors short-authors">Aoun SM, et al.</span> <span class="docsum-journal-citation full-journal-citation">J Neurol Sci. 2016 Aug 15;367:368-74. doi: 10.1016/j.jns.2016.06.033. 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Receiving the news of a diagnosis of motor neuron disease: What does it take to make it better? - PubMed