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Original research
End-of-life care in general practice: clinic-based data collection
  1. Jinfeng Ding1,2,
  2. Angus Cook2,
  3. David Chua3,
  4. Sharon Licqurish4,
  5. Marta Woolford4,
  6. Laura Deckx3,
  7. Geoffrey Mitchell3 and
  8. Claire E Johnson1,4,5
  1. 1 Medical School, The University of Western Australia, Perth, Western Australia, Australia
  2. 2 School of Population and Global Health, The University of Western Australia, Perth, Western Australia, Australia
  3. 3 Primary Care Clinical Unit, The University of Queensland, Brisbane, Queensland, Australia
  4. 4 Monash Nursing and Midwifery, Monash University, Clayton, Victoria, Australia
  5. 5 Faculty of Medicine, The University of Western Australia, Perth, Western Australia, Australia
  1. Correspondence to Jinfeng Ding, The University of Western Australia, Perth, WA 6009, Australia; jinfeng.ding{at}research.uwa.edu.au

Abstract

Background There are no processes that routinely assess end-of-life care in Australian general practice. This study aimed to develop a data collection process which could collect observational data on end-of-life care from Australian general practitioners (GPs) via a questionnaire and clinical data from general practice software.

Methods The data collection process was developed based on a modified Delphi study, then pilot tested with GPs through online surveys across three Australian states and data extraction from general practice software, and finally evaluated through participant interviews.

Results The developed data collection process consisted of three questionnaires: Basic Practice Descriptors (32 items), Clinical Data Query (32 items) and GP-completed Questionnaire (21 items). Data extraction from general practice software was performed for 97 decedents of 10 GPs and gathered data on prescriptions, investigations and referral patterns. Reports on care of 272 decedents were provided by 63 GPs. The GP-completed Questionnaire achieved a satisfactory level of validity and reliability. Our interviews with 23 participating GPs demonstrated the feasibility and acceptability of this data collection process in Australian general practice.

Conclusions The data collection process developed and tested in this study is feasible and acceptable for Australian GPs, and comprehensively covers the major components of end-of-life care. Future studies could develop an automated data extraction tool to reduce the time and recall burden for GPs. These findings will help build a nationwide integrated information network for primary end-of-life care in Australia.

  • data collection process
  • end-of-life care
  • general practice
  • feasibility and acceptability

Data availability statement

Data are available upon reasonable request.

https://doi.org/10.1136/bmjspcare-2019-002006

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    Data availability statement

    Data are available upon reasonable request.

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    Footnotes

    • Twitter @GeoffM_GP

    • Contributors Study concept and design: CJ, AC, GM and JD. Data collection: JD, DC, SL, MW and LD. Data cleaning and analysis: JD and DC. Preparation of manuscript: JD. Manuscript review: AC, CJ, DC, SL, MW, LD and GM.

    • Funding This project was supported by the Lishman Health Foundation, the Western Australia Primary Health Care Alliance (WAPHA), the Western Australia Cancer and Palliative Care Network, the Royal Australian College of General Practitioners (RACGP) Foundation and the Hospitals Contribution Fund (HCF) Research Foundation and the Primary Care Collaborative Cancer Clinical Trials Group (PC4). JD is supported by the China Scholarship Council (CSC).

    • 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.