Advance care planning for patients with advanced illnesses attending hospital outpatient clinics study: A study protocol for a randomised controlled trial

Joel Rhee, Anne Meller, Karolina Krysinska, Peter Gonski, Vasi Naganathan, Nicholas Zwar, Andrew Hayen, John Cullen, Julie Ann O'Keefe, Julie McDonald, Ben Harris-Roxas, Gideon A. Caplan

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Abstract

Introduction It 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 analysis Pragmatic 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 dissemination Approved 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.

Original languageEnglish
Article numbere023107
JournalBMJ Open
Volume9
Issue number1
DOIs
Publication statusPublished - 1 Jan 2019

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Advance Care Planning
Hospital Outpatient Clinics
Randomized Controlled Trials
Caregivers
Research Ethics Committees
Quality of Life
Documentation
Health
Control Groups
Ambulances
Hospital Records
Information Storage and Retrieval
Patient Admission
Health Services Research
Standard of Care
Ambulatory Care Facilities
Focus Groups
Palliative Care
Resuscitation
Ethics

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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. / Advance care planning for patients with advanced illnesses attending hospital outpatient clinics study : A study protocol for a randomised controlled trial. In: BMJ Open. 2019 ; Vol. 9, No. 1.
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title = "Advance care planning for patients with advanced illnesses attending hospital outpatient clinics study: A study protocol for a randomised controlled trial",
abstract = "Introduction It 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 analysis Pragmatic 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 dissemination Approved 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.",
author = "Joel Rhee and Anne Meller and Karolina Krysinska and Peter Gonski and Vasi Naganathan and Nicholas Zwar and Andrew Hayen and John Cullen and O'Keefe, {Julie Ann} and Julie McDonald and Ben Harris-Roxas and Caplan, {Gideon A.}",
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doi = "10.1136/bmjopen-2018-023107",
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Rhee, J, Meller, A, Krysinska, K, Gonski, P, Naganathan, V, Zwar, N, Hayen, A, Cullen, J, O'Keefe, JA, McDonald, J, Harris-Roxas, B & Caplan, GA 2019, 'Advance care planning for patients with advanced illnesses attending hospital outpatient clinics study: A study protocol for a randomised controlled trial' BMJ Open, vol. 9, no. 1, e023107. https://doi.org/10.1136/bmjopen-2018-023107

Advance care planning for patients with advanced illnesses attending hospital outpatient clinics study : A study protocol for a randomised controlled trial. / 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.

In: BMJ Open, Vol. 9, No. 1, e023107, 01.01.2019.

Research output: Contribution to journalArticleResearchpeer-review

TY - JOUR

T1 - Advance care planning for patients with advanced illnesses attending hospital outpatient clinics study

T2 - A study protocol for a randomised controlled trial

AU - Rhee, Joel

AU - Meller, Anne

AU - Krysinska, Karolina

AU - Gonski, Peter

AU - Naganathan, Vasi

AU - Zwar, Nicholas

AU - Hayen, Andrew

AU - Cullen, John

AU - O'Keefe, Julie Ann

AU - McDonald, Julie

AU - Harris-Roxas, Ben

AU - Caplan, Gideon A.

PY - 2019/1/1

Y1 - 2019/1/1

N2 - Introduction It 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 analysis Pragmatic 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 dissemination Approved 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.

AB - Introduction It 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 analysis Pragmatic 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 dissemination Approved 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.

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U2 - 10.1136/bmjopen-2018-023107

DO - 10.1136/bmjopen-2018-023107

M3 - Article

VL - 9

JO - BMJ Open

JF - BMJ Open

SN - 2044-6055

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