Development of a routine data collection process in community-based end-of-life care

  • Mitchell, Geoffrey K. (Primary Chief Investigator (PCI))
  • Deckx, Laura (Chief Investigator (CI))
  • Johnson, Claire (Chief Investigator (CI))

Project: Research

Project Details

Project Description

Background: Continuous collection of information about the health care provided to people who are unwell, combined with routine feedback, is considered to be the best way of evaluating and improving health care quality. However, in Australia, we still know little about the quality and how and what palliative and end-of-life care is provided in the community setting. There are no standardised processes for collecting information about this care.
Aims: 1. To develop and test an end-of-life questionnaire that can be used to routinely collect data on end-of-life care; information on causes of death, co-morbidities, location of care and death, symptom management techniques, service use (e.g. hospital admissions and ED visits, palliative care services) and advance care planning.
2. To test this questionnaire for feasibility and acceptability for routine data collection of end-of-life care in general practice.

Methods: We will develop and test an end-of-life questionnaire based on context specific knowledge of the Australian setting and existing questionnaires (such as SENTIMEL-C & SRPC questionnaires used in Europe). The new questionnaire will be tested in a two round Delphi expert consultation to grade the items and remove those items that are not appropriate. The remaining items will be used to build the final end-of-life questionnaire. We will test this questionnaire for feasibility in paper form on 200 decadents retrospectively and then 100 cases prospectively after any refinements identified from the retrospective data collection. Likely outcomes and benefits: The current health system needs to change to accommodate the rapidly ageing population and a rapidly escalating rate of expected deaths. Much care will take place in primary care, and at present there is no means of collecting data on this. Hence there is no quality control, and areas of weakness in management are unknowable. A viable primary care end-of-life care register will provide data which can be used for individual and practice based quality improvement, as well as track changes in medical practice over time. The outcome of this research will inform the development and implementation a national primary end-of-life care minimum dataset that includes routinely collected data on end-of-life management.
Effective start/end date22/11/1830/06/20