Article Text

Original research
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
  1. Jenny T van der Steen1,2,
  2. Sten Heck3,
  3. Carla CM Juffermans1,
  4. Mirjam Marjolein Garvelink4,
  5. Wilco P Achterberg1,
  6. Josephine Clayton5,6,
  7. Genevieve Thompson7,
  8. Raymond TCM Koopmans2,8,
  9. Yvette M van der Linden9
  1. 1Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands
  2. 2Primary and Community Care, Radboud university medical center, Nijmegen, The Netherlands
  3. 3Leiden University, Leiden, The Netherlands
  4. 4Value Based Healthcare, St Antonius Hospital, Nieuwegein, The Netherlands
  5. 5Centre for Learning & Research in Palliative Care, Hammond Care, Sydney, New South Wales, Australia
  6. 6Faculty of Medicine and Health, The University of Sydney Northern Clinical School, Sydney, New South Wales, Australia
  7. 7College of Nursing, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada
  8. 8Radboudumc Alzheimer Center, Radboud university medical center, Nijmegen, The Netherlands
  9. 9Department of Radiation Oncology, Leiden University Medical Center, Leiden, The Netherlands
  1. Correspondence to Dr Jenny T van der Steen; jtvandersteen{at}lumc.nl

Abstract

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.

  • geriatric medicine
  • adult palliative care
  • dementia

Data availability statement

The de-identified survey participant data may be requested from the corresponding author upon reasonable request. Interview recordings and transcripts are not available as they might render physicians recognisable to insiders.

http://creativecommons.org/licenses/by-nc/4.0/

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/.

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Data availability statement

The de-identified survey participant data may be requested from the corresponding author upon reasonable request. Interview recordings and transcripts are not available as they might render physicians recognisable to insiders.

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Footnotes

  • Twitter @DRThompson_GN

  • Presented at Preliminary results were presented at the 7th ACP-I Conference, Rotterdam, 13-16 March 2019 (poster prize).

  • Contributors The author’s responsibilities were as follows: Development of the question prompt list: JTvdS, CCMJ, MMG, JC, GT, RTCMK, YML. Project design: JTvdS, SH, WPA, MMG. Data collection: JTvdS, SH. Paper writing: JTvdS, SH. Critique and review of the final manuscript: All.

  • Funding The Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, the Netherlands, supported the study.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.