Healthcare professionals' views on the provision of gastrostomy and noninvasive ventilation to amyotrophic lateral sclerosis patients in England, Wales, and Northern Ireland
Gastrostomy and noninvasive ventilation (NIV) are recommended interventions for the management of symptoms associated with amyotrophic lateral sclerosis (ALS). This study aimed to quantify the views of a range of healthcare professionals (HCPs) on the provision of these interventions in the United K...
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| Veröffentlicht in: | Journal of palliative care 2013-12, Vol.29 (4), p.225-231 |
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| container_title | Journal of palliative care |
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| creator | Ruffell, Tamatha O Martin, Naomi H Janssen, Anna Wijesekera, Lokesh Knights, Catherine Burman, Rachel Oliver, David J Al-Chalabi, Ammar Goldstein, Laura H |
| description | Gastrostomy and noninvasive ventilation (NIV) are recommended interventions for the management of symptoms associated with amyotrophic lateral sclerosis (ALS). This study aimed to quantify the views of a range of healthcare professionals (HCPs) on the provision of these interventions in the United Kingdom. A total of 177 HCPs participated in an online survey. Significant differences were found between medical and allied HCPs' views on: whether HCPs adhere to policy and accept legal constraints when it comes to making gastrostomy available to people with ALS; the impressions that HCPs receive of the way patients and caregivers understand the effects of gastrostomy and NIV on symptoms and quality of life; and the challenges HCPs face when caring for patients who have refused gastrostomy. More widely available guidelines for the provision of gastrostomy and advice on the best way to impart information to patients and caregivers about gastrostomy and NIV appear to be needed. |
| doi_str_mv | 10.1177/082585971302900404 |
| format | Article |
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This study aimed to quantify the views of a range of healthcare professionals (HCPs) on the provision of these interventions in the United Kingdom. A total of 177 HCPs participated in an online survey. Significant differences were found between medical and allied HCPs' views on: whether HCPs adhere to policy and accept legal constraints when it comes to making gastrostomy available to people with ALS; the impressions that HCPs receive of the way patients and caregivers understand the effects of gastrostomy and NIV on symptoms and quality of life; and the challenges HCPs face when caring for patients who have refused gastrostomy. More widely available guidelines for the provision of gastrostomy and advice on the best way to impart information to patients and caregivers about gastrostomy and NIV appear to be needed.</description><identifier>ISSN: 0825-8597</identifier><identifier>EISSN: 2369-5293</identifier><identifier>DOI: 10.1177/082585971302900404</identifier><identifier>PMID: 24601073</identifier><language>eng</language><publisher>United States: SAGE PUBLICATIONS, INC</publisher><subject>Adult ; Allied Health Personnel - psychology ; Amyotrophic lateral sclerosis ; Amyotrophic Lateral Sclerosis - complications ; Attitude of Health Personnel ; England ; Female ; Gastrostomy - utilization ; Humans ; Male ; Medical personnel ; Noninvasive Ventilation - utilization ; Northern Ireland ; Palliative Care ; Practice Patterns, Physicians' - statistics & numerical data ; Quality of Life ; Studies ; Surveys and Questionnaires ; Ventilators ; Wales</subject><ispartof>Journal of palliative care, 2013-12, Vol.29 (4), p.225-231</ispartof><rights>Copyright Laboratoire de Recherche en Ethique et Vieillissement. Centre de Recherche Winter 2013</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c364t-f9eb1303e6dd1d5aac3da37c86f865d0c60a1611681ee563ad5e1d25ee7f8d353</citedby><cites>FETCH-LOGICAL-c364t-f9eb1303e6dd1d5aac3da37c86f865d0c60a1611681ee563ad5e1d25ee7f8d353</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>314,776,780,27903,27904</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/24601073$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Ruffell, Tamatha O</creatorcontrib><creatorcontrib>Martin, Naomi H</creatorcontrib><creatorcontrib>Janssen, Anna</creatorcontrib><creatorcontrib>Wijesekera, Lokesh</creatorcontrib><creatorcontrib>Knights, Catherine</creatorcontrib><creatorcontrib>Burman, Rachel</creatorcontrib><creatorcontrib>Oliver, David J</creatorcontrib><creatorcontrib>Al-Chalabi, Ammar</creatorcontrib><creatorcontrib>Goldstein, Laura H</creatorcontrib><title>Healthcare professionals' views on the provision of gastrostomy and noninvasive ventilation to amyotrophic lateral sclerosis patients in England, Wales, and Northern Ireland</title><title>Journal of palliative care</title><addtitle>J Palliat Care</addtitle><description>Gastrostomy and noninvasive ventilation (NIV) are recommended interventions for the management of symptoms associated with amyotrophic lateral sclerosis (ALS). This study aimed to quantify the views of a range of healthcare professionals (HCPs) on the provision of these interventions in the United Kingdom. A total of 177 HCPs participated in an online survey. Significant differences were found between medical and allied HCPs' views on: whether HCPs adhere to policy and accept legal constraints when it comes to making gastrostomy available to people with ALS; the impressions that HCPs receive of the way patients and caregivers understand the effects of gastrostomy and NIV on symptoms and quality of life; and the challenges HCPs face when caring for patients who have refused gastrostomy. More widely available guidelines for the provision of gastrostomy and advice on the best way to impart information to patients and caregivers about gastrostomy and NIV appear to be needed.</description><subject>Adult</subject><subject>Allied Health Personnel - psychology</subject><subject>Amyotrophic lateral sclerosis</subject><subject>Amyotrophic Lateral Sclerosis - complications</subject><subject>Attitude of Health Personnel</subject><subject>England</subject><subject>Female</subject><subject>Gastrostomy - utilization</subject><subject>Humans</subject><subject>Male</subject><subject>Medical personnel</subject><subject>Noninvasive Ventilation - utilization</subject><subject>Northern Ireland</subject><subject>Palliative Care</subject><subject>Practice Patterns, Physicians' - statistics & numerical data</subject><subject>Quality of Life</subject><subject>Studies</subject><subject>Surveys and Questionnaires</subject><subject>Ventilators</subject><subject>Wales</subject><issn>0825-8597</issn><issn>2369-5293</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2013</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><sourceid>GNUQQ</sourceid><recordid>eNqNkUFvFSEUhYmxsc_qH3BhSFzooqMXeDAzy6aptknTbjQuJxTu9NHMwBN4Y96P8j8KbXVhN65ION85XM4l5A2Dj4y17SfouOxk3zIBvAdYw_oZWXGh-kbyXjwnqwo0lTgkL1O6A4AWOLwgh3ytgEErVuTXOeopb4yOSLcxjJiSC15P6T1dHP5MNHiaN_fa4qpEw0hvdcoxpBzmPdXeUh-884tObkG6oM9u0rmiOVA970NhtxtnaLnFqCeazITF7hLdFq7wiTpPz_ztVMKO6Xc9YTq-D74KsTwePb2IWMVX5GAss-Hrx_OIfPt89vX0vLm8_nJxenLZGKHWuRl7vCmlCFTWMiu1NsJq0ZpOjZ2SFowCzRRjqmOIUgltJTLLJWI7dlZIcUQ-POSWb__YYcrD7JLBqcyAYZcGJkFyKXjf_ifKeqjou3_Qu7CLtexKgeiUgr5Q_IEypaMUcRy20c067gcGQ9378HTvxfT2MXp3M6P9a_mzaPEb4Emriw</recordid><startdate>20131201</startdate><enddate>20131201</enddate><creator>Ruffell, Tamatha O</creator><creator>Martin, Naomi H</creator><creator>Janssen, Anna</creator><creator>Wijesekera, Lokesh</creator><creator>Knights, Catherine</creator><creator>Burman, Rachel</creator><creator>Oliver, David J</creator><creator>Al-Chalabi, Ammar</creator><creator>Goldstein, Laura H</creator><general>SAGE PUBLICATIONS, INC</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>7RV</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>88G</scope><scope>8AO</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>8FQ</scope><scope>8FV</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AN0</scope><scope>ASE</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FPQ</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>K6X</scope><scope>K9.</scope><scope>KB0</scope><scope>M0S</scope><scope>M1P</scope><scope>M2M</scope><scope>M3G</scope><scope>NAPCQ</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>PSYQQ</scope><scope>Q9U</scope><scope>S0X</scope><scope>7X8</scope></search><sort><creationdate>20131201</creationdate><title>Healthcare professionals' views on the provision of gastrostomy and noninvasive ventilation to amyotrophic lateral sclerosis patients in England, Wales, and Northern Ireland</title><author>Ruffell, Tamatha O ; Martin, Naomi H ; Janssen, Anna ; Wijesekera, Lokesh ; Knights, Catherine ; Burman, Rachel ; Oliver, David J ; Al-Chalabi, Ammar ; Goldstein, Laura H</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c364t-f9eb1303e6dd1d5aac3da37c86f865d0c60a1611681ee563ad5e1d25ee7f8d353</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2013</creationdate><topic>Adult</topic><topic>Allied Health Personnel - psychology</topic><topic>Amyotrophic lateral sclerosis</topic><topic>Amyotrophic Lateral Sclerosis - complications</topic><topic>Attitude of Health Personnel</topic><topic>England</topic><topic>Female</topic><topic>Gastrostomy - utilization</topic><topic>Humans</topic><topic>Male</topic><topic>Medical personnel</topic><topic>Noninvasive Ventilation - utilization</topic><topic>Northern Ireland</topic><topic>Palliative Care</topic><topic>Practice Patterns, Physicians' - statistics & numerical data</topic><topic>Quality of Life</topic><topic>Studies</topic><topic>Surveys and Questionnaires</topic><topic>Ventilators</topic><topic>Wales</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Ruffell, Tamatha O</creatorcontrib><creatorcontrib>Martin, Naomi H</creatorcontrib><creatorcontrib>Janssen, Anna</creatorcontrib><creatorcontrib>Wijesekera, Lokesh</creatorcontrib><creatorcontrib>Knights, Catherine</creatorcontrib><creatorcontrib>Burman, Rachel</creatorcontrib><creatorcontrib>Oliver, David J</creatorcontrib><creatorcontrib>Al-Chalabi, Ammar</creatorcontrib><creatorcontrib>Goldstein, Laura H</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Central (Corporate)</collection><collection>Nursing & Allied Health Database</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Psychology Database (Alumni)</collection><collection>ProQuest Pharma Collection</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>Canadian Business & Current Affairs Database</collection><collection>Canadian Business & Current Affairs Database (Alumni Edition)</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest Central UK/Ireland</collection><collection>British Nursing Database</collection><collection>British Nursing Index</collection><collection>ProQuest Central Essentials</collection><collection>ProQuest Central</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>British Nursing Index (BNI) (1985 to Present)</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Central Student</collection><collection>British Nursing Index</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Database (Alumni Edition)</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>ProQuest Psychology</collection><collection>CBCA Reference & Current Events</collection><collection>Nursing & Allied Health Premium</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>ProQuest One Psychology</collection><collection>ProQuest Central Basic</collection><collection>SIRS Editorial</collection><collection>MEDLINE - Academic</collection><jtitle>Journal of palliative care</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Ruffell, Tamatha O</au><au>Martin, Naomi H</au><au>Janssen, Anna</au><au>Wijesekera, Lokesh</au><au>Knights, Catherine</au><au>Burman, Rachel</au><au>Oliver, David J</au><au>Al-Chalabi, Ammar</au><au>Goldstein, Laura H</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Healthcare professionals' views on the provision of gastrostomy and noninvasive ventilation to amyotrophic lateral sclerosis patients in England, Wales, and Northern Ireland</atitle><jtitle>Journal of palliative care</jtitle><addtitle>J Palliat Care</addtitle><date>2013-12-01</date><risdate>2013</risdate><volume>29</volume><issue>4</issue><spage>225</spage><epage>231</epage><pages>225-231</pages><issn>0825-8597</issn><eissn>2369-5293</eissn><abstract>Gastrostomy and noninvasive ventilation (NIV) are recommended interventions for the management of symptoms associated with amyotrophic lateral sclerosis (ALS). This study aimed to quantify the views of a range of healthcare professionals (HCPs) on the provision of these interventions in the United Kingdom. A total of 177 HCPs participated in an online survey. Significant differences were found between medical and allied HCPs' views on: whether HCPs adhere to policy and accept legal constraints when it comes to making gastrostomy available to people with ALS; the impressions that HCPs receive of the way patients and caregivers understand the effects of gastrostomy and NIV on symptoms and quality of life; and the challenges HCPs face when caring for patients who have refused gastrostomy. More widely available guidelines for the provision of gastrostomy and advice on the best way to impart information to patients and caregivers about gastrostomy and NIV appear to be needed.</abstract><cop>United States</cop><pub>SAGE PUBLICATIONS, INC</pub><pmid>24601073</pmid><doi>10.1177/082585971302900404</doi><tpages>7</tpages></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 0825-8597 |
| ispartof | Journal of palliative care, 2013-12, Vol.29 (4), p.225-231 |
| issn | 0825-8597 2369-5293 |
| language | eng |
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| source | MEDLINE; SAGE Complete |
| subjects | Adult Allied Health Personnel - psychology Amyotrophic lateral sclerosis Amyotrophic Lateral Sclerosis - complications Attitude of Health Personnel England Female Gastrostomy - utilization Humans Male Medical personnel Noninvasive Ventilation - utilization Northern Ireland Palliative Care Practice Patterns, Physicians' - statistics & numerical data Quality of Life Studies Surveys and Questionnaires Ventilators Wales |
| title | Healthcare professionals' views on the provision of gastrostomy and noninvasive ventilation to amyotrophic lateral sclerosis patients in England, Wales, and Northern Ireland |
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