Annual Progress Reports of Funded Research

A randomised trial of a Carer End of Life Planning Intervention (CELPI) in people dying with dementia (2006061)

  • Associate Professor Glenn Arendts (Chief Investigator A)
  • University of Western Australia  
  • Budget: $1,486,231.50
  • Funding period: 2021 to 2025

Project Synopsis

Dementia is the second highest cause of death in Australia. Although palliative care helps individuals avoid suffering and futile interventions at the end of life, only 6% of people that die of dementia receive such care. Many older people with dementia attend an emergency department (ED) in their final year of life. This research project will trial using that opportunity of an ED visit as the trigger to implement a triad of carer education, access to palliative care and a formal planning process for participants. We hypothesise that this intervention will reduce the number of people with dementia that die in a non-preferred location (primary outcome) and result in improvements in a number of system and patient centred secondary outcomes. This research is not about changing the palliative care model, but increasing access to it for a group of patients that are currently underrepresented.  

Progress report 30 April 2023

Since the previous reporting period the following activities have been undertaken:  

  • Protocol submission and Ethics approval for National Mutual Acceptance and addition of national sites obtained January 2022  
  • Reciprocal ethics and Research Governance Officer site specific assessments for all sites obtained prior to study commencement October 2022  
  • All study site initiation visits (including transfer of Electronic Investigator Site File (e-ISF) documents), staff training and database/randomisation setup completed  
  • Study commencement for screening and recruitment achieved on 17th October 2022  
  • To date, all 6 sites (across WA, NSW, VIC) actively screening and recruiting (sites responsible for updating and maintaining screening logs and information)  
  • As of this report, a total of 2,434 patients have been screened and 41 randomised onto study  
  • National Investigator Meetings held every 2 months which has contributed to study accountability, communication and efficiency.

 

The Enhanced Advance care planning and life Review Longitudinal Intervention (EARLI) study: Increasing proactive care planning in Australian community aged care settings (2006283)

  • Dr Craig Sinclair (Chief Investigator A)
  • University of New South Wales  
  • Budget: $955,827.82
  • Funding period: 2022 to 2026

Project Synopsis

The Enhanced Advance care planning and life Review Longitudinal Intervention (EARLI) project will proactively screen older adults at high-risk of health decline and provide assistance to discuss and document preferences for future care. The intervention is implemented in the community aged care setting, through partnerships with home care providers. Expected benefits include increased rates of advance care planning, higher quality documents and improved wellbeing among older adults and carers.

Advance care planning is a critical component of high-quality end of life care, and generates a number of benefits, however uptake is low and planning discussions are mostly initiated too late. This project will address this problem by trialling an integrated model of proactive screening and advance care planning implementation among older adults receiving community-based aged care services. The research team will partner with home care providers and use a cluster randomised controlled trial design, to identify eligible older adults and deliver a longitudinal, multi-component intervention. The EARLI intervention builds on existing national and international knowledge and practice, incorporating evidence-based components of life review, facilitated advance care planning and structured multi-disciplinary case conferencing. Older adults and nominated care partners will be invited to participate, with support for substitute decision-makers incorporated into the dyadic EARLI intervention. Engagement with lived experience experts, cultural community leaders and culture specific aged care providers will inform intervention design and implementation. Compared to an active control condition (conventional brief education on advance care planning) it is predicted that the EARLI intervention will result in increased rates of documented advance care planning (as measured in the home care provider client record), higher quality of advance care planning documentation, and reductions in decisional conflict, anxiety and depression among older adults and their care-partners. Economic analyses will take a system and societal perspective, using linked health and aged care data and incorporating care-partner self-reported economic costs. The measured outcomes will be meaningful to patients, families and carers, and will identify sustainable, cost-effective and person-centred end-of-life care models.

Progress report 30 April 2023

The project has received ethics approval and has commenced recruitment and data collection. A preliminary pilot survey with community dwelling older adults has been undertaken. This survey validated a number of hypothetical care and treatment scenarios, which are being used as part of the participant reported outcome measures in the trial. Two groups of community representatives with lived experience (of life-limiting illnesses and/or as care partners for people at end of life) have been convened and met four times during 2022, to refine the planned intervention. Eight aged care provider organisations have formally commenced on the project as study sites and are partnering with the project team to recruit participants receiving home care services into the trial.

 

IMPART - IMproving PAlliative care in Residential aged care using Telehealth (2006121)

  • Professor Wen Lim (Chief Investigator A)
  • National Ageing Research Institute  
  • Budget: $1,047,057.77
  • Funding period: 2022 to 2025

Project Synopsis

Sixty-thousand Australians die every year in residential aged care facilities but the quality of their end-of-life care varies. The IMPART program aims to improve palliative care in residential aged care using telehealth. The project will provide training and palliative-geriatric support to aged care staff and general practitioners to enable timely end-of-life discussions, improve documentation of care preferences, reduce avoidable hospitalisation and improve residents’ quality of care at the end of life.

The project will evaluate the effectiveness of the ‘IMproving PAlliative care in Residential aged care using Telehealth’ (IMPART) program. IMPART involves supporting General Practitioners (GPs), senior (residential aged care facility) RACF nurses and clinical care coordinators through 5 key activities:

  1. Create ‘Planning Ahead Teams’ in each RACF to develop tailored end of life care (EOLC) action plans
  2. Conduct a needs analysis to identify RACF staff’s EOLC training and support needs
  3. Facilitate EOLC workshops for Planning Ahead Teams
  4. Give teams access to existing EOLC online learning modules
  5. Provide teams with palliative and aged care specialist telehealth in-reach support.

These steps aim to engage RACF staff and GPs in shared decision-making and EOLC discussions with residents and families to improve EOLC and reduce avoidable hospital transfers.

Progress report 30 April 2023

For the IMPART project, all start up activities have been completed, including resourcing of appropriate and skilled staff (including a PhD student), establishment of Steering Committee and Working Groups, multi-institutional agreement execution, successful ethics approval, successful governance approval across multiple sites, nine residential aged care facility agreements being signed, effective partner engagement, and the formal Randomised Control Trial (RCT) is ready to commence, with all data collection methods and RCT documentation ready to be used.

 

Improving the wellbeing of people with advanced cancer and their family carers: An effectiveness-implementation trial of an Australian dyadic digital health intervention (FOCUSau) (2006170)

  • Professor Peter Hudson (Chief Investigator A)
  • University of Melbourne  
  • Budget: $1,095,278.03
  • Funding period: 2022 to 2025

Project Synopsis

The end-of-life wishes for many Australians are not upheld which has a negative impact on their quality of life as well as their family carers. However, patient and carer wellbeing is improved when they are supported together. Our research will adapt and then examine the clinical and health economic benefits of an internet-based strategy (developed in the USA) which aims to improve the quality of life of patients with advanced cancer and their family carers.

FOCUS is an evidence-based, digital health intervention shown to improve the wellbeing of patients with advanced cancer and their primary family carers in the USA. This proposal seeks to enhance palliative and end-of-life care by:  

  1. adapting FOCUS for use in the Australian context;  
  2. examining its clinical and health economic benefits via a Phase III hybrid effectiveness-implementation trial; and  
  3. exploring the acceptability, feasibility and scalability of FOCUS to inform its potential implementation into the Australian health care system and facilitate its sustainability.

Progress report 30 April 2023

Since the previous reporting period, the following activities have been undertaken:  

  • Ethics approval from the University of Melbourne for adaptation of intervention
  • Ethics approval from St Vincent's Hospital, Melbourne for the clinical trial
  • Provisional approval from the University of Melbourne to sponsor the trial
  • Deployment of the intervention from Europe and housed with the University of Melbourne
  • Expression of interests sent out for hospitals to participate in the trial
  • Plan for creating a study website to assist with recruitment underway
  • Multi-site agreements and other related contractual arrangements underway with several collaborators
  • Data collection for review and adaptation of the European version of the intervention underway.