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.
Wan J, Vaughan A, Shepherd E, Coombs S, Trethewie S, Jaaniste T.
Abstract: Paediatric Palliative Care Ambulance Plans ('Plans') are used by New South Wales Ambulance (Australia) to support the care needs of children with life-limiting conditions. We aimed to describe the population of children with Plans and provide details regarding Plan completion, paramedic responses during ambulance callouts, and correspondence between Plan recommendations and paramedic responses. Plans lodged in January 2017-December 2019 were retrospectively coded for demographic information, completeness and care preferences. Associated paramedic callout notes (January 2018-December 2019) were coded for paramedic responses. Of 141 Plans retrieved, 38 (41.3% of those providing suggested medications) suggested medication use outside general paramedic scope of practice. Of 199 associated ambulance callouts, reasons for callout included symptom management, planned transfer, death notification and end-of-life care. Over two-thirds of callouts (n = 135, 67.8%) occurred after-hours. Most paramedic callouts (n = 124, 62.3%), excluding planned transfers, resulted in children being transported. Paramedic interventions corresponded with interventions suggested in Plans. However, only 24 (25.3%) of paramedic callout notes documented Plans being sighted. This study provided detailed information about children with palliative care needs for whom Plans were being used, the nature of these Plans and associated paramedic callouts. However, it is not known how paramedics were influenced by Plans.
Cheng H, Jiang S, Liu T, Li B, Chen S, Li A, et al.
Background: Understanding policymakers' value judgements in reimbursement decisions is essential for promoting equity and guiding informed healthcare decision-making. This study aimed to estimate and compare Chinese policymakers' willingness-to-pay (WTP) per quality-adjusted life year (QALY) specifically in end-of-life treatment scenarios involving life-threatening common and rare diseases.
Methods: We conducted a contingent valuation study employing single-bounded dichotomous-choice questions among 120 experts formally appointed by China's National Healthcare Security Administration to serve on the National Reimbursement Drug List Expert Committee in recent years. Participants evaluated hypothetical scenarios describing end-of-life treatments providing a one-QALY gain for patients with life-threatening common or rare diseases. Data were collected primarily through face-to-face interviews, supplemented by online responses when in-person meetings were impractical. Statistical analysis was performed using probit regression models, and t-tests were conducted to compare WTP values between scenarios.
Results: A total of 99 policymakers participated. Participants' WTP per QALY for end-of-life treatments in common disease scenarios ranged from CNY 78,031 (0.98 times GDP per capita) to CNY 126,449 (1.58 times GDP per capita). In contrast, WTP was significantly higher for rare diseases, ranging from CNY 183,392 (2.29 times GDP per capita) to CNY 219,691 (2.75 times GDP per capita). Analysis of individual characteristics revealed that female participants and those with expertise in pharmacoeconomics exhibited significantly higher WTP values in common disease scenarios (p < 0.05), though these factors had varied effects in rare disease scenarios.
Conclusion: This study provides novel estimates of Chinese policymakers' WTP per QALY specifically in end-of-life contexts involving common and rare diseases, highlighting the significant impact of disease rarity on reimbursement decisions. These findings offer empirical support for adopting differentiated cost-effectiveness thresholds tailored to end-of-life treatments based on disease rarity in China.
Dai Y, Daveson BA, Ding J, Chen Y, Guo J, Cheng Y, et al.
Background: A person-centered outcomes-based quality improvement program is lacking within palliative care in Mainland China. The well-established Australian Palliative Care Outcome Collaboration (PCOC) national model improves palliative care quality.
Objectives: This study aimed to explore the barriers and facilitators perceived by healthcare providers to integrating the PCOC model in a Chinese hospital-based palliative care unit.
Methods: A qualitative descriptive study was conducted using semi-structured focus group and individual interviews. A rapid deductive analysis approach was selected for data analysis. The Consolidated Framework for Implementation Research framework was used to guide the study design, data collection, analysis, and interpretation.
Results: Eighteen healthcare professionals participated in this study, four focus group interviews and five individual interviews were completed. Barriers to the PCOC integration included clinical application and workload concerns (patients in terminal stage, patients' dialects, workload concerns, and staff shortages); attitudinal barriers (negative attitudes toward PCOC); psychological barriers (numbness to their work) and barriers related to knowledge and self-efficacy (lack of knowledge, capacity, and self-efficacy in palliative care). Facilitators included adapting the program to local contexts, ongoing education and feedback, effective PCOC data use, a supportive work and clinical environment and staff's perceived advantages of the model across clinical, research and process domains.
Significance of results: The successful integration of the PCOC program hinges on local adaptation, improved data utilization, education, and IT support. In regions with less developed palliative care, enhancing professionals' knowledge and self-efficacy is crucial. Incorporating assessment and clinical response protocols into technology can accelerate palliative care development and implementation.
Fogarty S, Moore R, Cates C.
Background: Serious illness "is a health condition that carries a high risk of mortality and either negatively impacts a person's daily function or quality of life or excessively strains their caregivers."
Purpose: The aim of this review was to explore the contribution of massage and massage therapy to the mental health and well-being of individuals living with a serious and potentially life-limiting illness.
Methods: A scoping review was conducted following Arksey and O'Malley's six-step scoping review framework and the PRISMA-ScR guidelines. The electronic databases PubMed, CINAHL, MEDLINE (OVID), PsychINFO, CENTRAL, Web of Science, PROQUEST Dissertations and Theses, and Scopus were searched to identify qualitative or mixed-methods studies. The qualitative data were coded from the studies and themes emerged. For the final stage of analysis, a thematic synthesis was utilized.
Findings: Sixteen papers were included from eight countries. The overarching theme was "the effable and ineffable impacts of massage" informed by the following themes: massage as a transcendent experience, existential respite, massage helping to preserve dignity, increased inner resources, well-being and relaxation as part of the individualized and personalized vocabulary for massage for the seriously ill, and varied outcomes of the effect of massage on physical symptoms.
Conclusion: Good mental health and well-being are important aspects of living well with serious illness. The review found there is a considerable body of research which points to the value and impact of massage on outcomes of well-being and mental health and, broadly, on patient experience.
Jonescu EE, Farrell B, Ramanayaka CE, Delaney L, Litton E, Uylaki TJ, et al.
Environmental design in palliative care settings receives increasing attention, yet methodologies for studying such environments often lack interdisciplinary integration. Traditional research designs may overlook the lived expertise of clinicians and designers.
Objectives: This article describes a collaborative, cross-disciplinary communities-of-practice model developed as a methodological framework to enable effective environmental evaluation and design processes in healthcare settings. Its application is illustrated through a case study in a palliative care unit.
Methods: A co-designed, multi-methods approach was developed by a team of clinicians, facility managers, and academic researchers. The methodology included a scoping review, site-specific environmental data logging (sound, temperature, lighting), and co-created survey tools for staff and patients or proxies. Data were collected over two phases, following ethically approved protocols to protect privacy and support data validity.
Results: The communities-of-practice model successfully integrated cross-sector expertise, improved the contextual relevance of study instruments, and enabled real-time, context-sensitive data collection in a high-acuity clinical setting. The method supported context-aware adaptations that would not have emerged from conventional top-down research approaches, effectively bridging academic inquiry and practical clinical application.
Conclusion: The communities-of-practice model offers a replicable, interdisciplinary method for researching complex healthcare environments. Its case study in a palliative care unit demonstrates its capacity to generate actionable insights aligned with patient-centred outcomes. As health architecture increasingly intersects with evidence-based care delivery, such methodological approaches are vital for aligning design decisions with clinical and human-centred goals.
Last updated 30 April 2024