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Professionals guidance about palliative medicine in chronic heart failure: a mixed-method study
  1. Stephanie M C Ament1,
  2. Marieke van den Beuken-Everdingen2,
  3. José M C Maessen3,
  4. Josiane Boyne3,
  5. Jos M G A Schols1,4,
  6. Henri E J H Stoffers4,
  7. Louise Bellersen5,
  8. Hans-Peter Brunner-La Rocca6,
  9. Yvonne Engels7 and
  10. Daisy J A Janssen1,8
  1. 1Care and Public Health Research Institute (CAPHRI), Department of Health Services Research, Maastricht University Faculty of Health Medicine and Life Sciences, Maastricht, The Netherlands
  2. 2Centre of Expertise for Palliative Care, Maastricht UMC+, Maastricht, The Netherlands
  3. 3Department of Patient and Care, Maastricht University Medical Centre (MUMC+), Maastricht, The Netherlands
  4. 4Care and Public Health Research Institute (CAPHRI), Department of Family Medicine, Maastricht University Faculty of Health Medicine and Life Sciences, Maastricht, The Netherlands
  5. 5Department of Cardiology, Radboudumc, Nijmegen, The Netherlands
  6. 6Department of Cardiology, Maastricht Universitair Medisch Centrum+, Maastricht, The Netherlands
  7. 7Anesthesiology, Pain and Palliative medicine, Radboud university medical center, Nijmegen, The Netherlands
  8. 8Research & Education, CIRO, Horn, The Netherlands
  1. Correspondence to Dr Stephanie M C Ament, Care and Public Health Research Institute (CAPHRI), Department of Health Services Research, Maastricht University Faculty of Health Medicine and Life Sciences, Maastricht 6229 GT, Netherlands; s.ament{at}maastrichtuniversity.nl

Abstract

Introduction Healthcare professionals (HCPs) experience difficulties in timely recognising and directing palliative care (PC) needs of their patients with chronic heart failure (CHF). The aim of this study was to develop a comprehensive tool to enable HCPs in timely recognising and directing PC needs in CHF.

Methods A four-stage mixed-method study was performed. Stage 1: identification of needs and questions of patients and families; stage 2: prioritisation and refinement of the needs and questions; stage 3a: testing and online feedback on V.1; stage 3b: selecting and refining care recommendations; stage 4: testing and review of V.2. Iterative reviews followed each step in the development process to ensure a wide range of stakeholder input. In total, 16 patients, 12 family members and 54 HCPs participated.

Results A comprehensive set of 13 PC needs was identified, redefined and tested. The resulting tool, called Identification of patients with HeARt failure with PC needs (I-HARP), contains an introduction prompt with open questions to start the conversation, 13 closed screening questions with additional in-depth questions, and recommendations on actions for identified needs.

Conclusion I-HARP contains an evidence-based set of questions and palliative CHF care suggestions for HCPs in the Netherlands. The resulting tool, approved by HCPs, patients and family members, is a promising guidance for HCP to timely recognise and direct PC needs in CHF.

  • heart failure
  • communication
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/.

https://doi.org/10.1136/bmjspcare-2020-002580

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    Footnotes

    • Twitter @StephanieAment

    • Contributors SA, MvdB-E, JMCM, JB, JMGAS, HEJHS, LB, H-PB-LR, YE and DJAJ contributed to the design and planning of the research. DJAJ is the prinicipal researcher of the I-HARP project. SA, DJAJ, JB and MvdB-E were mainly responsible for the development of the data collection methods and the interpretation of the data. SA was responsible for the data collection and data analyses. SA wrote the draft of the manuscript. SA, MvdB-E, JMCM, JB, JMGAS, HEJHS, LB, H-PB-LR, YE and DJAJ were involved in editing the manuscript. All authors have given final approval of the version to be published. All authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. SA is guarantor.

    • Funding This project has been made possible by a grant from the Netherlands Organisation for Health Research and Development (ZonMw) as part of the programme Palliantie (grant number 844001511).

    • Competing interests None declared.

    • Patient consent for publication Not required.

    • Ethics approval The medical ethical committee of the Maastricht University Medical Centre (MUMC+), Maastricht, the Netherlands declared that the study did not fall under the Medical Research Involving Human Subjects Act (2018–0638).

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

    • Data availability statement Data are available on reasonable request. All data relevant to the study are included in the article or uploaded as online supplemental information.