Practitioners’ perceptions of acceptability of a question prompt list about palliative care for advance care planning with people living with dementia and their family caregivers: a mixed-methods evaluation study

Objectives In oncology and palliative care, patient question prompt lists (QPLs) with sample questions for patient and family increased patients’ involvement in decision-making and improved outcomes if physicians actively endorsed asking questions. Therefore, we aim to evaluate practitioners’ percep...

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Main Authors: Raymond TCM Koopmans, Jenny T van der Steen, Josephine Clayton, Wilco P Achterberg, Yvette M van der Linden, Genevieve Thompson, Sten Heck, Carla CM Juffermans, Mirjam Marjolein Garvelink
Format: Article
Language:English
Published: BMJ Publishing Group 2021-04-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/11/4/e044591.full
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author Raymond TCM Koopmans
Jenny T van der Steen
Josephine Clayton
Wilco P Achterberg
Yvette M van der Linden
Genevieve Thompson
Sten Heck
Carla CM Juffermans
Mirjam Marjolein Garvelink
author_facet Raymond TCM Koopmans
Jenny T van der Steen
Josephine Clayton
Wilco P Achterberg
Yvette M van der Linden
Genevieve Thompson
Sten Heck
Carla CM Juffermans
Mirjam Marjolein Garvelink
author_sort Raymond TCM Koopmans
collection DOAJ
description Objectives In oncology and palliative care, patient question prompt lists (QPLs) with sample questions for patient and family increased patients’ involvement in decision-making and improved outcomes if physicians actively endorsed asking questions. Therefore, we aim to evaluate practitioners’ perceptions of acceptability and possible use of a QPL about palliative and end-of-life care in dementia.Design Mixed-methods evaluation study of a QPL developed with family caregivers and experts comprising a survey and interviews with practitioners.Setting Two academic medical training centres for primary and long-term care in the Netherlands.Participants Practitioners (n=66; 73% woman; mean of 21 (SD 11) years of experience) who were mostly general practitioners and elderly care physicians.Outcomes The main survey outcome was acceptability measured with a 15–75 acceptability scale with ≥45 meaning ‘acceptable’.Results The survey response rate was 21% (66 of 320 participated). The QPL was regarded as acceptable (mean 51, SD 10) but 64% felt it was too long. Thirty-five per cent would want training to be able to answer the questions. Those who felt unable to answer (31%) found the QPL less acceptable (mean 46 vs 54 for others; p=0.015). We identified three themes from nine interviews: (1) enhancing conversations through discussing difficult topics, (2) proactively engaging in end-of-life conversations and (3) possible implementation.Conclusion Acceptability of the QPL was adequate, but physicians feeling confident to be able to address questions about end-of-life care is crucial when implementing it in practice, and may require training. To facilitate discussions of advance care planning and palliative care, families and persons with dementia should also be empowered to access the QPL themselves.
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spelling doaj-art-befee390b4604bddb635daecfae0791f2024-11-21T15:20:08ZengBMJ Publishing GroupBMJ Open2044-60552021-04-0111410.1136/bmjopen-2020-044591Practitioners’ perceptions of acceptability of a question prompt list about palliative care for advance care planning with people living with dementia and their family caregivers: a mixed-methods evaluation studyRaymond TCM Koopmans0Jenny T van der Steen1Josephine Clayton2Wilco P Achterberg3Yvette M van der Linden4Genevieve Thompson5Sten Heck6Carla CM Juffermans7Mirjam Marjolein Garvelink8Radboudumc Alzheimer Center, Radboud university medical center, Nijmegen, The NetherlandsDepartment of Public Health and Primary Care, Leiden University Medical Center, Leiden, The NetherlandsFaculty of Medicine and Health, The University of Sydney Northern Clinical School, Sydney, New South Wales, AustraliaDepartment of Public Health and Primary Care, Leiden University Medical Center, Leiden, South-Holland, Netherlands5 Center of Expertise in Palliative Care/Department of Radiotherapy, Leiden University Medical Center, Leiden, The NetherlandsCollege of Nursing, University of Manitoba, Winnipeg, Manitoba, CanadaLeiden University, Leiden, The NetherlandsPublic Health and Primary Care, Leiden University Medical Center, Leiden, The NetherlandsValue Based Healthcare, St Antonius Hospital, Nieuwegein, The NetherlandsObjectives In oncology and palliative care, patient question prompt lists (QPLs) with sample questions for patient and family increased patients’ involvement in decision-making and improved outcomes if physicians actively endorsed asking questions. Therefore, we aim to evaluate practitioners’ perceptions of acceptability and possible use of a QPL about palliative and end-of-life care in dementia.Design Mixed-methods evaluation study of a QPL developed with family caregivers and experts comprising a survey and interviews with practitioners.Setting Two academic medical training centres for primary and long-term care in the Netherlands.Participants Practitioners (n=66; 73% woman; mean of 21 (SD 11) years of experience) who were mostly general practitioners and elderly care physicians.Outcomes The main survey outcome was acceptability measured with a 15–75 acceptability scale with ≥45 meaning ‘acceptable’.Results The survey response rate was 21% (66 of 320 participated). The QPL was regarded as acceptable (mean 51, SD 10) but 64% felt it was too long. Thirty-five per cent would want training to be able to answer the questions. Those who felt unable to answer (31%) found the QPL less acceptable (mean 46 vs 54 for others; p=0.015). We identified three themes from nine interviews: (1) enhancing conversations through discussing difficult topics, (2) proactively engaging in end-of-life conversations and (3) possible implementation.Conclusion Acceptability of the QPL was adequate, but physicians feeling confident to be able to address questions about end-of-life care is crucial when implementing it in practice, and may require training. To facilitate discussions of advance care planning and palliative care, families and persons with dementia should also be empowered to access the QPL themselves.https://bmjopen.bmj.com/content/11/4/e044591.full
spellingShingle Raymond TCM Koopmans
Jenny T van der Steen
Josephine Clayton
Wilco P Achterberg
Yvette M van der Linden
Genevieve Thompson
Sten Heck
Carla CM Juffermans
Mirjam Marjolein Garvelink
Practitioners’ perceptions of acceptability of a question prompt list about palliative care for advance care planning with people living with dementia and their family caregivers: a mixed-methods evaluation study
BMJ Open
title Practitioners’ perceptions of acceptability of a question prompt list about palliative care for advance care planning with people living with dementia and their family caregivers: a mixed-methods evaluation study
title_full Practitioners’ perceptions of acceptability of a question prompt list about palliative care for advance care planning with people living with dementia and their family caregivers: a mixed-methods evaluation study
title_fullStr Practitioners’ perceptions of acceptability of a question prompt list about palliative care for advance care planning with people living with dementia and their family caregivers: a mixed-methods evaluation study
title_full_unstemmed Practitioners’ perceptions of acceptability of a question prompt list about palliative care for advance care planning with people living with dementia and their family caregivers: a mixed-methods evaluation study
title_short Practitioners’ perceptions of acceptability of a question prompt list about palliative care for advance care planning with people living with dementia and their family caregivers: a mixed-methods evaluation study
title_sort practitioners perceptions of acceptability of a question prompt list about palliative care for advance care planning with people living with dementia and their family caregivers a mixed methods evaluation study
url https://bmjopen.bmj.com/content/11/4/e044591.full
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