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.
Smith T. A, Roberts M. M, Luckett T, Cho J. G, Klimkeit E, Stephenson H, McCaffrey N, Kirby A, Wheatley J. R.
Background: Chronic obstructive pulmonary disease (COPD) is an often-progressive respiratory disease associated with disabling breathlessness. Breathlessness intervention services (BIS), which coach patients to self-manage breathlessness using non-pharmacological strategies, are effective in a variety of populations, including those with cancer and serious respiratory disease. This study aimed to compare the impact of the Westmead Breathlessness Service in people with moderate to severe COPD.
Methods: We analysed 113 participants randomised (1:1) with moderate/severe COPD (forced expiratory volume in 1 s (FEV1)/forced vital capacity <0.70 and FEV1 ≤60% predicted) and disabling breathlessness (modified Medical Research Council (mMRC) Breathlessness Score ≥2) to either an 8-week intervention involving breathing techniques, handheld fan use, exercise, energy conservation, dietetic advice (n=54) or 8-week wait-list control group (n=59). The primary outcome was change in Chronic Respiratory Questionnaire (CRQ) Mastery of breathlessness subscale. Secondary outcomes included change in other CRQ subscales (Fatigue, Emotion and Dyspnoea), exertional breathlessness intensity/unpleasantness (0-10 Numerical Rating Scale Score), anxiety and depression. Difference in change over 8 weeks between groups was compared using ANCOVA; p<0.05 statistically significant.
Findings: Participants were aged 70.9 (±8.5) years, 50% female, mean FEV1 =0.8 L (±0.3 L; 34% predicted), mMRC Breathlessness Score 3 (IQR 3-4). CRQ-Mastery improved following intervention compared with control (between-group difference 0.5 units; 95% CI 0.2 to 0.8; p=0.0262) using modified intention-to-treat analysis. Better CRQ-Dyspnoea and CRQ-Fatigue were seen in the intervention group (between-group difference-CRQ-Dyspnoea 0.4 units; CI 0.1 to 0.7; p=0.005, and CRQ-Fatigue 0.4 units; CI 0.1 to 0.7; p=0.014). Exertional breathlessness intensity (difference -0.8 units; CI -1.4 to -0.2; p=0.013) and breathlessness unpleasantness (difference -1.2 units; CI -1.7 to -0.6; p=0.001) also improved.
Interpretation: An 8-week BIS improved CRQ-Mastery, Dyspnoea and Fatigue, exertional breathlessness intensity and unpleasantness in people with severe COPD.
Brown LJ, Meredith G, Gao B, Ding P, Gee H, da Silva IP, et al.
Abstract: Lung cancer remains the leading cause of cancer-related mortality in Australia, with diagnoses projected to rise further following the introduction of the National Lung Cancer Screening Program in July 2025. Comprehensive molecular profiling has become central to the management of non-small cell lung cancer, enabling tailored therapies such as chemoimmunotherapy, immunotherapy, and tyrosine kinase inhibitors in perioperative, adjuvant, and palliative settings. With the emergence of perioperative systemic therapies and novel agents for the management of metastatic disease, there is a need to ensure that equitable care is delivered across Australia. Further investment in oncology workforce expansion and planning is critical to meet growing demands. In this narrative review, we explore the rapidly evolving landscape of available therapeutics for managing patients with early and advanced NSCLC in the Australian context, highlight the emerging treatment options being investigated in ongoing clinical trials, and discuss future considerations for clinical practice.
Dutton AE, Whiteman IT, Jones MM, Geering KE, Afshar S, Johnson AM, et al.
Abstract: Neuronal ceroid lipofuscinosis type 3 (CLN3) disease is a rare, life-limiting pediatric neurodegenerative disorder with no approved disease-modifying therapy. We conducted a prospective case report from October 2023 to April 2025 involving two female siblings with genetically confirmed CLN3 disease (homozygous for the common 1 kb deletion). Both patients were treated with oral, weight-based miglustat for 18 months. Miglustat was supplied as off-label use in the absence of a therapeutic alternative for this severe neurodegenerative disorder. Clinical outcomes were assessed using comprehensive ophthalmologic evaluation, the Unified Batten Disease Rating Scale (UBDRS), and the Vineland Adaptive Behavior Scales, Third Edition (Vineland-3). At the time of report, patients were aged 13 and 10 years. Both had been diagnosed at age 7 years and commenced miglustat at ages 11 and 9 years, respectively. Over the treatment period, both patients demonstrated improvement in visual acuity and clinical stabilization on the Unified Batten Disease Rating Scale. One patient showed measurable improvement in adaptive functioning as assessed by Vineland-3. No significant adverse effects were reported. These preliminary findings suggest potential short-term clinical benefit of miglustat in pediatric patients with CLN3 disease, particularly when initiated early in the disease course. Further studies involving larger cohorts and longer follow-up are warranted to evaluate the safety and long-term efficacy of miglustat in this population.
Jayakody K, Bajaj I, Blomeley D.
Introduction: Despite reduced life expectancy and high rates of comorbidity, individuals with severe persistent mental illness (SPMI) face significant disparities in healthcare access and quality, which extends to palliative and end-of-life (EOL) care. Literature shows that this population is 3.5 times less likely to be referred to specialist palliative care services. Limited access to palliative and EOL care with suboptimal quality of care increases vulnerability and exacerbates suffering for both patients and their families.
Methods: This retrospective case series examines the challenges encountered by older adults with SPMI, upon transitioning from curative to palliative approaches of care.
Results: Analysis of three cases using deductive thematic analysis revealed key themes: delayed recognition of psychiatric treatment futility, late or denied access to palliative care, fragmented models of service delivery and ethico-legal complexities. Referrals to palliative care occurred late—often days before death—thereby limiting opportunities for proactive care planning, caregiver support and preparation for EOL care.
Conclusions: Early recognition of treatment futility and poor prognosis could have prompted earlier palliative care involvement, enhancing patient comfort and family support. A dynamic interplay between multimorbidity, frailty and dementia in the context of SPMI is observed, with these co-occurring conditions collectively influencing clinical trajectories and service responses. This study emphasises the importance of improved clinician training, clearer referral pathways and integrated care models in addressing this disparity. Implementing these measures will aid in addressing longstanding inequalities and ensure individuals with SPMI receive appropriate and timely palliative and EOL care.
Weckend M, Gent L, Godecke E, Coventry L, Doleman G, Towell-Barnard A, et al.
Background: Research priorities guide research activities, funding and resources within health services. To ensure that research efforts are meaningful and impactful, it is vital that organisational research agendas reflect the priorities of both healthcare consumers and staff, alongside broader national and international research frameworks. This paper outlines a research priority-setting project conducted across two hospitals in Western Australia, aimed at identifying shared research priorities through a collaborative and inclusive approach.
Aim: To identify the top ten nursing and allied health research priorities for two hospitals in Western Australia.
Methods: A modified James Lind Alliance Priority Setting Partnership approach was used, involving health services users, nurses, allied health professionals, and community members in a co-design approach across three phases. In phase 1, four community conversations were conducted to elicit an initial set of research topics. This data-informed phase 2, a survey to collect diverse views from a wider participant pool. In phase 3, a pre-selected sample of potential research priorities was discussed in a consensus workshop to reach a group consensus of the top ten research priorities. Qualitative data was analysed using multi-step thematic analysis, and quantitative data was analysed using descriptive statistics.
Results: A total of 67, 151 and 18 people participated across study phases 1, 2 and 3, respectively, comprising nurses, allied health professionals, healthcare users, carers, and interested community members. The top ten research priorities reflected three areas: healthcare systems re/design (streamlining care; access to healthcare; patient journey and quality of care), workforce needs (workforce well-being, retention and adequate staffing; workforce training), and specific health issues and needs (dementia and delirium; mental health; caring for carers; Aboriginal and Torres Strait Islander health; palliative care and elderly people).
Conclusion: The research priorities identified in this study for two hospitals in Western Australia reflect the strong desire of nurses, allied health professionals, healthcare users and community members to improve structural issues in healthcare systems. This includes how healthcare systems are designed and integrated with each other, how workforce needs affect service delivery, and a greater focus on holistic service provision for specific health issues and needs.
Patient or public contribution: Healthcare consumers were an integral part of this study. Healthcare consumers were involved in the design of the study, the conduct of the study, and the review of the data analysis.
Last updated 30 April 2024