The following lists palliative care research primarily conducted by Australian research groups. The list is based on application of the CareSearch search filter for palliative care to identify articles held within the PubMed database and corresponding to the strongest evidence. Articles have been selected based on relevance and new articles are added on a weekly basis.
Whilst not an exhaustive list, the aim is to keep the community informed by providing a snapshot of recent research findings and planned studies in the Australian setting.
Kinchin I, Jiang P, Street D, Norman R, Currow D, Agar M, et al.
Purpose: Ensuring the values applied in health technology assessment of palliative care accurately reflect the palliative context is crucial for informed and effective resource allocation. The aim of this study is to examine whether the valuation of EQ-5D health states varies when framed within a palliative care needs context: limited life expectancy and availability of supports.
Methods: This study was a multinational cross-sectional discrete choice experiment (DCE) with respondents from the general populations of Australia (n = 2,082), Ireland (n = 1,280), and the UK (n = 2,009). Each participant was presented with a series of 20 choice sets, in which they were asked to choose between two EQ-5D-5L health states and immediate death. Half of the choice sets were accompanied by a "context vignette" while the remaining half were "context-free". The context vignettes, developed through a four-stage iterative process, described four distinct levels of palliative care needs. A D-efficient DCE design was developed, and the data were analysed using multinomial logit regression models.
Results: The study found inconsistencies in the EQ-5D-5L health state valuations in palliative contexts compared with context free valuation. Both life expectancy and level of support impacted health state valuation, with life expectancy having the larger effect. The inclusion of the palliative care vignettes substantially increased the number of health states that were given values worse than dead. This increase was more pronounced in Australia and the UK than in Ireland.
Conclusion: These results imply that EQ-5D value sets that are context free require careful interpretation, especially when applied in settings such as palliative care.
Latimer S, Walker RM, Hewitt J, Ray-Barruel G, Shaw J, Hunt T, et al.
Background: Some dying individuals can develop skin injuries at the end-of-life (EOL) due to factors associated with the disease processes, aging or both. These EOL wounds, which include Kennedy terminal ulcers, Trombley-Brennan terminal tissue injuries, Skin Changes at Life's End and end-stage skin failure, have distinguishing features. Yet, they can appear similar to pressure injuries (PIs), making assessment difficult. Compounding this was the lack of clinical assessment tool for EOL wounds. In 2022, we conducted a modified Delphi panel to develop a new EOL wound assessment tool for use in dying adults and established the face and content validity of the items. The new tool does not differentiate between a PI and EOL wound; rather, it aids clinicians' assessment of EOL wound characteristics and suggests the development of a multidisciplinary management plan. The next step in the tool development is to determine its reliability. The aim of this study was to test the study protocol and interrater reliability of a new EOL wound assessment tool.
Methods: This feasibility study was conducted in dying hospitalised adult patients admitted to medical and palliative care units at three hospitals across southeast Queensland, Australia. We gathered quantitative data according to the study protocol including participant screening, recruitment, consent, data collection and interrater reliability. Our four research assistants (RAs) and an independent blinded outcome assessor were trained in the study protocol and use of the new EOL wound assessment tool. Using a pragmatic approach, patients with a new reported PI were screened for study eligibility. For recruited participants, clinical data, skin blanching, and a deidentified wound photograph were first collected. Next, the RAs used the new tool to assess the patient and the skin to determine the presence of an EOL wound (Yes/No). An off-site independent blinded outcome assessor accessed the participant research data and, using the new tool, undertook the same assessment as the RA. Frequencies and percentages were computed for the feasibility outcomes. Cohen's kappa statistic was calculated to determine the interrater reliability agreement.
Results: Over 20 months, 140 patients were screened, with 23 (16.4%) eligible for recruitment, exceeding our ≥ 10% target. Ten (43.5%) participants were recruited, which fell short of our ≥ 50% target, with study refusal and imminent death the reasons for non-recruitment. Among the 10 recruited study participants, 13 wounds were observed on the sacrum, coccyx, and lower extremities. The interrater reliability between the two assessors was moderate (n = 8/13; 61.5%), with disagreement on five wounds, all located on the heels and toes.
Conclusions: Assessing for EOL wounds in dying patients is a clinical imperative. With minor study protocol adjustments, such as having two clinicians concurrently undertake independent wound assessment and only recruiting from palliative care units, conducting a larger multisite study testing the inter- and intrarater reliability of the new EOL wound assessment tool is feasible.
Callander E, Hu Y, Bull C, Flenady V, Ellwood D, Lancaster A, et al.
Background: Delivering timely, accessible, and cost-effective perinatal bereavement support to parents is essential to support their emotional and mental wellbeing. However, there is limited evidence on the economic impact of online-based support programs.
Objective: This study conducted a cost-utility analysis of parents who participated in a randomised controlled trial - comparing the Living with Loss program (LWL; eight-week online program for parents following perinatal death) with care-as-usual (CAU), from the perspective of the healthcare system.
Methods: A health service utilisation survey was designed to collect the hospital and out-of-hospital health services, and prescription medications accessed by participants during the study period. Total costs included costs to the governments and individuals (AUD 2023/24) over time. Utility was measured using quality-adjusted life years (QALYs) calculated based on the Assessment of Quality of Life (AQoL)-8D.
Findings: Among the 95 randomised parents, 52 (20 LWL, 32 CAU) completed economic assessments at baseline (week 0) and post-program (week 9). Of these 52 participants, 39 (16 LWL, 23 CAU) further completed the three-month follow up assessment (week 21). Compared with CAU, the LWL program showed trends towards costs savings in primary care and maintained similar health outcomes at post-program (-$264.59 per participant, p = 0.47; QALY gained=-0.001, p = 0.9) and three-month follow up (-$531.52 per participant, p = 0.3; QALY gained=-0.002, p = 0.94).
Conclusion: This study provides preliminary evidence of potential economic benefits of the LWL Program. Future studies with larger sample sizes and adequate power are needed to fully assess the cost-effectiveness of online perinatal bereavement support services.
George G, Kirk D, Porock D.
Aim: This paper aims to explain the process of formulating a robust theory that comprehensively explains the nurse's role during the transition from curative to the palliative phase in advanced cancer care.
Design: A qualitative theory synthesis approach was applied, utilising Turner's 9-step theory synthesis method to integrate five grounded theories and 10 qualitative studies. The Walker and Avant method of concept development and analysis further ensured rigour.
Methods: Turner's theory synthesis was used to formulate a more comprehensive, testable theory from five existing grounded theories and 10 other qualitative studies that explain the nurse's role in supporting and facilitating the transition from curative to palliative care in oncology.
Results: The synthesis preparation stage involved a detailed literature review that located five grounded theories and 10 qualitative studies. The theory synthesis phase from steps 1-8 produced the following theory. 'During transitions from curative to palliative care in advanced cancer, nurses perform various roles that fall within the known and recognised-"visible spectrum" and the unknown and unrecognised-"invisible spectrum". Step 9 involves the refinement of the theory by further interrogation of its merit in the real world.
Conclusion: Theory synthesis offers a new possibility of cumulating all the evidence research that is already done to adapt it to practice and helping to build theory-driven evidence-based practice.
Impact: This paper offers a novel theoretical framework that explicates the visible and invisible roles of nurses in transitioning patients with advanced cancer from curative to palliative care. It contributes to clinical practice by clarifying complex nursing responsibilities that are often unacknowledged, such as brokering referrals, emotional reframing and cultural advocacy. The theory, validated through expert review, can inform curriculum development, support professional recognition and guide practice standards. Broader impacts include enhancing patient-centred care, improving interdisciplinary collaboration and shaping policies that acknowledge the full scope of nursing work in oncology and palliative care transitions.
Helyar M, Eamens M, Coombs S, Smeal T, Mherekumombe M, Jaaniste T.
Objectives: Pediatric end-of-life (EOL) care at home is often provided by community palliative care (CPC) nurses who do not specialize in pediatrics. This study aimed to better understand the challenges CPC nurses face when providing EOL care to children at home.
Methods: A total of 52 CPC nurses across New South Wales (NSW), Australia, participated in an online survey about their training, attitudes, and experiences regarding the provision of home-based pediatric EOL care. Participants were asked to reflect back over a "negative" experience of caring for a child at EOL, where things did not go as well as hoped, and a "positive" EOL care experience, where nurses perceived that care of the child and family went well, and respond to questions about these experiences.
Results: Confidence of CPC nurses when providing EOL care to pediatric patients was significantly lower than when caring for adults (p's < .05). Most respondents expressed the desire for more training in pediatric EOL care. Cases identified as negative by CPC nurses did not significantly differ from positive cases in terms of the timing of the referral to CPC, clinical symptoms at EOL, or how well informed the nurses felt. Siblings were present at EOL in 74% of the negative experiences and 86% of the positive experiences, reportedly receiving significantly poorer support in the negative experiences (p = .002).
Conclusion: This research contributes to an improved understanding of the challenges associated with home-based pediatric EOL care and highlights potential areas for improvement in CPC service delivery and training.
Last updated 30 April 2024