Advance care planning for patients with advanced illnesses attending hospital outpatient clinics study: a study protocol for a randomised controlled trial
IntroductionIt is unclear whether advance care planning (ACP) undertaken with patients living in the community can improve patient care and avoid unwanted interventions and hospital admissions. We have designed a randomised controlled trial (RCT) to examine if ACP undertaken with patients with advan...
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creator | Rhee, Joel Meller, Anne Krysinska, Karolina Gonski, Peter Naganathan, Vasi Zwar, Nicholas Hayen, Andrew Cullen, John O’Keefe, Julie-Ann McDonald, Julie Harris-Roxas, Ben Caplan, Gideon A |
description | IntroductionIt is unclear whether advance care planning (ACP) undertaken with patients living in the community can improve patient care and avoid unwanted interventions and hospital admissions. We have designed a randomised controlled trial (RCT) to examine if ACP undertaken with patients with advanced illnesses attending hospital outpatient clinics can reduce unplanned hospital admissions and improve patient and caregiver well-being.Methods and analysisPragmatic RCT involving patients from subspecialty outpatient clinics at five clinical sites in Sydney, Australia. Participants will be ≥18 years screened as potentially having palliative care needs and at risk of dying in 6–12 months. The patients will be randomised to intervention or control group. Intervention group will undertake ACP discussions facilitated by a trained health professional. The control group will receive written information on ACP, representing the current standard of care. The primary outcome is the number of unplanned hospital admissions at the 6-month follow-up. Secondary outcomes include: (i) patient’s health-related quality-of-life and quality of chronic disease care; (ii) caregiver’s health-related quality-of-life and caregiver burden and (iii) other health outcomes including ambulance usage, emergency department presentations, hospital admissions, resuscitation attempts, intensive care unit admissions, deaths, documentation of patient wishes in patient records and audit of ACP discussions and documents. The staff’s self-reported attitudes and knowledge of ACP will also be measured. The data will be collected using self-report questionnaires, hospital records audit, audit of ACP documentation and data linkage analysis. Semistructured interviews and focus group discussions with patients, caregivers and healthcare professionals will explore the acceptability and feasibility of the intervention.Ethics and disseminationApproved by South-East Sydney Local Health District Human Research Ethics Committee and NSW Population and Health Services Research Ethics Committee. Results will be disseminated via conference presentations, journal publications, seminars and invited talks.Trial registration numberACTRN12617000280303. |
doi_str_mv | 10.1136/bmjopen-2018-023107 |
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We have designed a randomised controlled trial (RCT) to examine if ACP undertaken with patients with advanced illnesses attending hospital outpatient clinics can reduce unplanned hospital admissions and improve patient and caregiver well-being.Methods and analysisPragmatic RCT involving patients from subspecialty outpatient clinics at five clinical sites in Sydney, Australia. Participants will be ≥18 years screened as potentially having palliative care needs and at risk of dying in 6–12 months. The patients will be randomised to intervention or control group. Intervention group will undertake ACP discussions facilitated by a trained health professional. The control group will receive written information on ACP, representing the current standard of care. The primary outcome is the number of unplanned hospital admissions at the 6-month follow-up. Secondary outcomes include: (i) patient’s health-related quality-of-life and quality of chronic disease care; (ii) caregiver’s health-related quality-of-life and caregiver burden and (iii) other health outcomes including ambulance usage, emergency department presentations, hospital admissions, resuscitation attempts, intensive care unit admissions, deaths, documentation of patient wishes in patient records and audit of ACP discussions and documents. The staff’s self-reported attitudes and knowledge of ACP will also be measured. The data will be collected using self-report questionnaires, hospital records audit, audit of ACP documentation and data linkage analysis. Semistructured interviews and focus group discussions with patients, caregivers and healthcare professionals will explore the acceptability and feasibility of the intervention.Ethics and disseminationApproved by South-East Sydney Local Health District Human Research Ethics Committee and NSW Population and Health Services Research Ethics Committee. Results will be disseminated via conference presentations, journal publications, seminars and invited talks.Trial registration numberACTRN12617000280303.</description><identifier>ISSN: 2044-6055</identifier><identifier>EISSN: 2044-6055</identifier><identifier>DOI: 10.1136/bmjopen-2018-023107</identifier><identifier>PMID: 30679290</identifier><language>eng</language><publisher>England: BMJ Publishing Group LTD</publisher><subject>Advance Care Planning ; Advance directives ; Audits ; Australia ; Caregivers ; Chronic Disease - therapy ; Clinical decision making ; Decision making ; Documentation - standards ; Elder care ; Endorsements ; Evidence-based medicine ; Guardians ; Health Knowledge, Attitudes, Practice ; Health services ; Health surveys ; Humans ; Intensive care ; Intervention ; Medical personnel ; Mortality ; Multicenter Studies as Topic ; Outpatient Clinics, Hospital ; Palliative care ; Palliative Care - methods ; Patient admissions ; Patient-Centred Medicine ; Planning ; Quality of Life ; Randomized Controlled Trials as Topic ; Self Report ; Well being</subject><ispartof>BMJ open, 2019-01, Vol.9 (1), p.e023107-e023107</ispartof><rights>Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.</rights><rights>2019 Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ . Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><rights>Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. 2019</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-b472t-877884a6d3a1e267a6dedbe78c3e6772072dee9bdd2ede7d9094c909bb0ec6373</citedby><cites>FETCH-LOGICAL-b472t-877884a6d3a1e267a6dedbe78c3e6772072dee9bdd2ede7d9094c909bb0ec6373</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://bmjopen.bmj.com/content/9/1/e023107.full.pdf$$EPDF$$P50$$Gbmj$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://bmjopen.bmj.com/content/9/1/e023107.full$$EHTML$$P50$$Gbmj$$Hfree_for_read</linktohtml><link.rule.ids>230,314,723,776,780,860,881,27526,27527,27901,27902,53766,53768,77570,77601</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/30679290$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Rhee, Joel</creatorcontrib><creatorcontrib>Meller, Anne</creatorcontrib><creatorcontrib>Krysinska, Karolina</creatorcontrib><creatorcontrib>Gonski, Peter</creatorcontrib><creatorcontrib>Naganathan, Vasi</creatorcontrib><creatorcontrib>Zwar, Nicholas</creatorcontrib><creatorcontrib>Hayen, Andrew</creatorcontrib><creatorcontrib>Cullen, John</creatorcontrib><creatorcontrib>O’Keefe, Julie-Ann</creatorcontrib><creatorcontrib>McDonald, Julie</creatorcontrib><creatorcontrib>Harris-Roxas, Ben</creatorcontrib><creatorcontrib>Caplan, Gideon A</creatorcontrib><title>Advance care planning for patients with advanced illnesses attending hospital outpatient clinics study: a study protocol for a randomised controlled trial</title><title>BMJ open</title><addtitle>BMJ Open</addtitle><description>IntroductionIt is unclear whether advance care planning (ACP) undertaken with patients living in the community can improve patient care and avoid unwanted interventions and hospital admissions. We have designed a randomised controlled trial (RCT) to examine if ACP undertaken with patients with advanced illnesses attending hospital outpatient clinics can reduce unplanned hospital admissions and improve patient and caregiver well-being.Methods and analysisPragmatic RCT involving patients from subspecialty outpatient clinics at five clinical sites in Sydney, Australia. Participants will be ≥18 years screened as potentially having palliative care needs and at risk of dying in 6–12 months. The patients will be randomised to intervention or control group. Intervention group will undertake ACP discussions facilitated by a trained health professional. The control group will receive written information on ACP, representing the current standard of care. The primary outcome is the number of unplanned hospital admissions at the 6-month follow-up. Secondary outcomes include: (i) patient’s health-related quality-of-life and quality of chronic disease care; (ii) caregiver’s health-related quality-of-life and caregiver burden and (iii) other health outcomes including ambulance usage, emergency department presentations, hospital admissions, resuscitation attempts, intensive care unit admissions, deaths, documentation of patient wishes in patient records and audit of ACP discussions and documents. The staff’s self-reported attitudes and knowledge of ACP will also be measured. The data will be collected using self-report questionnaires, hospital records audit, audit of ACP documentation and data linkage analysis. Semistructured interviews and focus group discussions with patients, caregivers and healthcare professionals will explore the acceptability and feasibility of the intervention.Ethics and disseminationApproved by South-East Sydney Local Health District Human Research Ethics Committee and NSW Population and Health Services Research Ethics Committee. Results will be disseminated via conference presentations, journal publications, seminars and invited talks.Trial registration numberACTRN12617000280303.</description><subject>Advance Care Planning</subject><subject>Advance directives</subject><subject>Audits</subject><subject>Australia</subject><subject>Caregivers</subject><subject>Chronic Disease - therapy</subject><subject>Clinical decision making</subject><subject>Decision making</subject><subject>Documentation - standards</subject><subject>Elder care</subject><subject>Endorsements</subject><subject>Evidence-based medicine</subject><subject>Guardians</subject><subject>Health Knowledge, Attitudes, Practice</subject><subject>Health services</subject><subject>Health surveys</subject><subject>Humans</subject><subject>Intensive care</subject><subject>Intervention</subject><subject>Medical personnel</subject><subject>Mortality</subject><subject>Multicenter Studies as Topic</subject><subject>Outpatient Clinics, Hospital</subject><subject>Palliative care</subject><subject>Palliative Care - methods</subject><subject>Patient admissions</subject><subject>Patient-Centred Medicine</subject><subject>Planning</subject><subject>Quality of Life</subject><subject>Randomized Controlled Trials as Topic</subject><subject>Self Report</subject><subject>Well being</subject><issn>2044-6055</issn><issn>2044-6055</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2019</creationdate><recordtype>article</recordtype><sourceid>9YT</sourceid><sourceid>ACMMV</sourceid><sourceid>EIF</sourceid><sourceid>BENPR</sourceid><recordid>eNqNkU1rHSEUhofS0IQkv6BQhG66mdSPGR27KITQLwh0k6zF0XNzvXh1qk5C_kp_bZ3ObUi7qgt9wee8nuPbNK8JviCE8ffjfhcnCC3FZGgxZQSLF80JxV3Xctz3L5_p4-Y85x2uq-tl39NXzTHDXEgq8Unz89Le62AAGZ0ATV6H4MId2sSEJl0chJLRgytbpFfOIud9gJwhI10KBLvg25gnV7RHcS6HMmS8C85klMtsHz8gvQo0pViiif73ExolHWzcu1yNTQwlRe-rLMlpf9YcbbTPcH44T5vbz59urr6219-_fLu6vG7HTtDSDkIMQ6e5ZZoA5aIqsCOIwTDgQlAsqAWQo7UULAgrsexM3cYRg-FMsNPm4-o7zeMerKnNJ-3VlNxep0cVtVN_3wS3VXfxXnHWiYEvBu8OBin-mCEXVQcy4OtnQpyzokTIjg9S0oq-_QfdxTmFOt5C4YERgmWl2EqZFHNOsHlqhmC1xK8O8aslfrXGX6vePJ_jqeZP2BW4WIFa_V-OvwCKeMES</recordid><startdate>20190101</startdate><enddate>20190101</enddate><creator>Rhee, Joel</creator><creator>Meller, Anne</creator><creator>Krysinska, Karolina</creator><creator>Gonski, Peter</creator><creator>Naganathan, Vasi</creator><creator>Zwar, Nicholas</creator><creator>Hayen, Andrew</creator><creator>Cullen, John</creator><creator>O’Keefe, Julie-Ann</creator><creator>McDonald, Julie</creator><creator>Harris-Roxas, Ben</creator><creator>Caplan, Gideon A</creator><general>BMJ Publishing Group LTD</general><general>BMJ Publishing Group</general><scope>9YT</scope><scope>ACMMV</scope><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>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>BTHHO</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>K9-</scope><scope>K9.</scope><scope>KB0</scope><scope>M0R</scope><scope>M0S</scope><scope>M1P</scope><scope>M2M</scope><scope>NAPCQ</scope><scope>PIMPY</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>PSYQQ</scope><scope>Q9U</scope><scope>7X8</scope><scope>5PM</scope></search><sort><creationdate>20190101</creationdate><title>Advance care planning for patients with advanced illnesses attending hospital outpatient clinics study: a study protocol for a randomised controlled trial</title><author>Rhee, Joel ; Meller, Anne ; Krysinska, Karolina ; Gonski, Peter ; Naganathan, Vasi ; Zwar, Nicholas ; Hayen, Andrew ; Cullen, John ; O’Keefe, Julie-Ann ; McDonald, Julie ; Harris-Roxas, Ben ; Caplan, Gideon A</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-b472t-877884a6d3a1e267a6dedbe78c3e6772072dee9bdd2ede7d9094c909bb0ec6373</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2019</creationdate><topic>Advance Care Planning</topic><topic>Advance directives</topic><topic>Audits</topic><topic>Australia</topic><topic>Caregivers</topic><topic>Chronic Disease - therapy</topic><topic>Clinical decision making</topic><topic>Decision making</topic><topic>Documentation - standards</topic><topic>Elder care</topic><topic>Endorsements</topic><topic>Evidence-based medicine</topic><topic>Guardians</topic><topic>Health Knowledge, Attitudes, Practice</topic><topic>Health services</topic><topic>Health surveys</topic><topic>Humans</topic><topic>Intensive care</topic><topic>Intervention</topic><topic>Medical personnel</topic><topic>Mortality</topic><topic>Multicenter Studies as Topic</topic><topic>Outpatient Clinics, Hospital</topic><topic>Palliative care</topic><topic>Palliative Care - methods</topic><topic>Patient admissions</topic><topic>Patient-Centred Medicine</topic><topic>Planning</topic><topic>Quality of Life</topic><topic>Randomized Controlled Trials as Topic</topic><topic>Self Report</topic><topic>Well being</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Rhee, Joel</creatorcontrib><creatorcontrib>Meller, Anne</creatorcontrib><creatorcontrib>Krysinska, Karolina</creatorcontrib><creatorcontrib>Gonski, Peter</creatorcontrib><creatorcontrib>Naganathan, Vasi</creatorcontrib><creatorcontrib>Zwar, Nicholas</creatorcontrib><creatorcontrib>Hayen, Andrew</creatorcontrib><creatorcontrib>Cullen, John</creatorcontrib><creatorcontrib>O’Keefe, Julie-Ann</creatorcontrib><creatorcontrib>McDonald, Julie</creatorcontrib><creatorcontrib>Harris-Roxas, Ben</creatorcontrib><creatorcontrib>Caplan, Gideon A</creatorcontrib><collection>BMJ Open Access Journals</collection><collection>BMJ Journals:Open Access</collection><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>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest Central UK/Ireland</collection><collection>ProQuest Central Essentials</collection><collection>ProQuest Central</collection><collection>BMJ Journals</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Central Student</collection><collection>Consumer Health Database (Alumni Edition)</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Database (Alumni Edition)</collection><collection>Consumer Health Database</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>ProQuest Psychology</collection><collection>Nursing & Allied Health Premium</collection><collection>Publicly Available Content Database</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>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>BMJ open</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Rhee, Joel</au><au>Meller, Anne</au><au>Krysinska, Karolina</au><au>Gonski, Peter</au><au>Naganathan, Vasi</au><au>Zwar, Nicholas</au><au>Hayen, Andrew</au><au>Cullen, John</au><au>O’Keefe, Julie-Ann</au><au>McDonald, Julie</au><au>Harris-Roxas, Ben</au><au>Caplan, Gideon A</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Advance care planning for patients with advanced illnesses attending hospital outpatient clinics study: a study protocol for a randomised controlled trial</atitle><jtitle>BMJ open</jtitle><addtitle>BMJ Open</addtitle><date>2019-01-01</date><risdate>2019</risdate><volume>9</volume><issue>1</issue><spage>e023107</spage><epage>e023107</epage><pages>e023107-e023107</pages><issn>2044-6055</issn><eissn>2044-6055</eissn><abstract>IntroductionIt is unclear whether advance care planning (ACP) undertaken with patients living in the community can improve patient care and avoid unwanted interventions and hospital admissions. We have designed a randomised controlled trial (RCT) to examine if ACP undertaken with patients with advanced illnesses attending hospital outpatient clinics can reduce unplanned hospital admissions and improve patient and caregiver well-being.Methods and analysisPragmatic RCT involving patients from subspecialty outpatient clinics at five clinical sites in Sydney, Australia. Participants will be ≥18 years screened as potentially having palliative care needs and at risk of dying in 6–12 months. The patients will be randomised to intervention or control group. Intervention group will undertake ACP discussions facilitated by a trained health professional. The control group will receive written information on ACP, representing the current standard of care. The primary outcome is the number of unplanned hospital admissions at the 6-month follow-up. Secondary outcomes include: (i) patient’s health-related quality-of-life and quality of chronic disease care; (ii) caregiver’s health-related quality-of-life and caregiver burden and (iii) other health outcomes including ambulance usage, emergency department presentations, hospital admissions, resuscitation attempts, intensive care unit admissions, deaths, documentation of patient wishes in patient records and audit of ACP discussions and documents. The staff’s self-reported attitudes and knowledge of ACP will also be measured. The data will be collected using self-report questionnaires, hospital records audit, audit of ACP documentation and data linkage analysis. Semistructured interviews and focus group discussions with patients, caregivers and healthcare professionals will explore the acceptability and feasibility of the intervention.Ethics and disseminationApproved by South-East Sydney Local Health District Human Research Ethics Committee and NSW Population and Health Services Research Ethics Committee. Results will be disseminated via conference presentations, journal publications, seminars and invited talks.Trial registration numberACTRN12617000280303.</abstract><cop>England</cop><pub>BMJ Publishing Group LTD</pub><pmid>30679290</pmid><doi>10.1136/bmjopen-2018-023107</doi><oa>free_for_read</oa></addata></record> |
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subjects | Advance Care Planning Advance directives Audits Australia Caregivers Chronic Disease - therapy Clinical decision making Decision making Documentation - standards Elder care Endorsements Evidence-based medicine Guardians Health Knowledge, Attitudes, Practice Health services Health surveys Humans Intensive care Intervention Medical personnel Mortality Multicenter Studies as Topic Outpatient Clinics, Hospital Palliative care Palliative Care - methods Patient admissions Patient-Centred Medicine Planning Quality of Life Randomized Controlled Trials as Topic Self Report Well being |
title | Advance care planning for patients with advanced illnesses attending hospital outpatient clinics study: a study protocol for a randomised controlled trial |
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