End-of-life care in general practice: clinic-based data collection

Abstract

BackgroundThere 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.MethodsThe 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.ResultsThe 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.ConclusionsThe 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.

Comparison of end‐of‐life care for people living in home settings versus residential aged care facilities: A nationwide study among Australian general practitioners

“…The information collected in our process included physical, psychosocial and spiritual aspects of care; communication with patients and families; settings for care and death; continuity and coordination of care and the support for families. A detailed description of the development is published elsewhere (Ding, Cook, Chua, et al, 2020).…”

Experiences of family caregivers of patients with terminal disease and the quality of end-of-life care received: a mixed methods study

“…A good level of satisfaction has been reported, contrasting with accounts of the suffering experienced in accompanying and looking after a dying loved one ( Cía-Ramos et al, 2012 ). According to other studies ( Reigada, Ribeiro & Novellas, 2015 ; Finucane et al, 2020 ; Ding et al, 2020 ), experience of care can be influenced by practical issues (admittance, technical assistance, social resources/health) and factors related to relationships (bonds, loss, privacy, support to caregivers, sharing), inner experience (feelings, confrontation strategies, affection, suffering, death, psychological support), and health (symptoms, information on the disease, vulnerability of caregivers).…”

Perceptions of primary care dietitians regarding the collection and use of outcomes data in practice: A qualitative study.

“…The findings are drawn from the perceptions of a breadth of peernominated experienced, TLs, operating practices of varying sizes and scopes, across each mainland state. The methodology used in this study is evidence-based (18)(19)(20)24) and the findings provide the first examination of the perceptions of leading primary care practitioners on the work they do.…”

“…A semi-structured interview protocol was developed by the research team and informed by protocols previously used by others (19,20) . The questions examined aspects of current and desired data collection and usage.…”