You are here

Article Text

Article menu
Download PDFPDF
Original research
Non-specialist palliative care - question prompt list preparation: patient, family and clinician experiences
  1. Mary-Joanne Verhoef1,
  2. Ellen de Nijs1,
  3. Boudewijn Sweep1,
  4. Desirée Warmerdam-Vergroesen1,
  5. Nanda Horeweg2,
  6. Arwen Pieterse3,
  7. Jenny van der Steen4,5 and
  8. Yvette van der Linden1,2
  1. 1 Center of Expertise in Palliative Care, Leids Universitair Medisch Centrum, Leiden, Zuid-Holland, The Netherlands
  2. 2 Department of Radiation Oncology, Leids Universitair Medisch Centrum, Leiden, Zuid-Holland, The Netherlands
  3. 3 Department of Biomedical Data Sciences, Leids Universitair Medisch Centrum, Leiden, Zuid-Holland, The Netherlands
  4. 4 Public Health and Primary Care, Leids Universitair Medisch Centrum, Leiden, Zuid-Holland, The Netherlands
  5. 5 Department of Primary and Community Care, Radboudumc, Nijmegen, Gelderland, The Netherlands
  1. Correspondence to Dr Mary-Joanne Verhoef, Center of Expertise in Palliative Care, Leiden Universitair Medisch Centrum, Leiden, Netherlands; m.verhoef{at}lumc.nl

Abstract

Objectives Question prompt lists (QPLs) support patients and family to ask questions they consider important during conversations with clinicians. We aimed to evaluate how a QPL developed for specialist palliative care is used during consultations and is perceived by patients and family, and how non-specialist clinicians would use the QPL. We further developed the QPL using these perspectives.

Methods The QPL is part of a conversation guide on palliative care. Patients and family were asked to select topics and questions before consultation with a palliative care consultant. This qualitative study (2016–2018) included 18 interviews with patients and family who had used the QPL, 17 interviews with non-specialist clinicians and 32 audiotaped consultations with palliative care consultants. The data were analysed thematically and iteratively to adjust the QPL accordingly.

Results All participants considered the QPL elaborate, but recommended keeping all content. Patients and family found that it helps to structure thoughts, ask questions and regain a sense of control. They also felt the QPL could support them in gathering information. Although it could evoke strong emotions, their real challenge was being in the palliative phase. Clinicians considered the QPL especially helpful as an overview of possible discussion topics. During audiotaped consultations, topics other than those selected were also addressed.

Conclusion By using the QPL, patients and family felt empowered to express their information needs. Its use may not be as unsettling as clinicians assume. Nevertheless, clinicians who hand out the QPL should introduce the QPL properly to optimise its use.

  • communication
  • supportive care
  • symptoms and symptom management

Data availability statement

Data are available upon reasonable request. All data relevant to the study are included in the article or uploaded as supplementary information. All relevant data is shown in the manuscript; the authors may provide additional data upon reasonable request.

https://doi.org/10.1136/bmjspcare-2021-003035

Statistics from Altmetric.com

    Request Permissions

    If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

    Data availability statement

    Data are available upon reasonable request. All data relevant to the study are included in the article or uploaded as supplementary information. All relevant data is shown in the manuscript; the authors may provide additional data upon reasonable request.

    View Full Text

    Footnotes

    • Contributors AHP, EDN and YvdL provided the conceptual framework for this study. M-JV, EDN, BS and DW-V contributed to data collection. M-JV, BS and DW-V analysed the data. NH was involved in analysis of quantitative data. M-JV wrote the manuscript and all authors contributed by providing critical comments on the manuscript. M-JV is the guarantor of the content.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • 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.