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.
Dunn CD, Halpern MTD, Sapkaroski DD, Gibbs PP.
Background and aims: Quality indicators are essential to measure and benchmark the quality of cancer care. Although there are well-established metrics for early-stage colorectal cancer, few exist for advanced colorectal cancer. This scoping review aims to collate and review all quality indicators for metastatic colorectal cancer.
Methods: A dedicated search was performed of Web of Science, PubMed, CINAHL and relevant grey literature to identify quality indicators for metastatic colorectal cancer, evaluating the diagnostic workup, systemic anticancer treatments, surgical approaches, radiation approaches, supportive care and palliative/terminal care provided to patients.
Results: We identified 11 articles, of which 5 were systematized reviews and 6 articles concerned the development, validation or operationalization of QIs. Thirty-five distinct QIs for metastatic colorectal cancer were extracted across 6 domains of care: 1) diagnosis, staging and treatment planning, 2) systemic anti-cancer treatment, 3) radiation oncology, 4) surgical approaches, 5) supportive care, 6) palliative and end of life care, with a general QI of overall survival. Of the 35 QIs extracted, 8 (22%) were unique to metastatic CRC, and 27 (77%) were generic QIs across different tumour types but applicable to mCRC.
Conclusion and relevance: There are few quality indicators specifically relevant to metastatic colorectal cancer. Those that do exist are generally generic process measures used across tumour types, and do not measure the nuance or complexity of current multidisciplinary management of patients with metastatic colorectal cancer.
Paterson C, Nicholas M, Fore P, Eawetau D, Agudiyosi H, Pakau EP, et al.
Objectives: First, to understand Papua New Guinea (PNG) oncology nursing issues perceived through the nurses' lens of unmet supportive care needs of people affected by cancer and to identify nurses' self-perceived educational priorities in cancer care. Second, to evaluate the tailored bidirectional learning and knowledge transfer among the participants of the Australia Capital Territory Health and PNG Oncology Nursing Development Program hosted in Australia in June 2023.
Methods: A qualitative descriptive study was conducted. Two focus groups were audio-recorded, transcribed, and analyzed using inductive thematic analysis. Based on PNG oncology nurses' experiences and self-assessed educational needs, the findings were analyzed and presented separately for Time 1 before the PNG Oncology Nursing Development program and Time 2 following the completion of the program.
Results: The findings from the Time 1 focus group identified four themes: (1) educational priorities, (2) system-wide challenges, (3) patient unmet care needs, and (4) cultural beliefs. After the completion of the educational program, there were four emergent themes: (1) new educational experiences, (2) learnings into practice, (3) culturally sensitive nursing, and (4) leadership (PNG nursing trailblazers). This study, for the first time, provided the PNG RNs with a "voice," to empower them to take more leading roles in important decision-making regarding care structures and management.
Conclusion: Policymakers, government officials, and international cancer organizations must continue to work together to support cancer control in PNG in light of the current and projected limited resources and barriers to timely cancer diagnosis and treatment in PNG.
Copyright © 2024 The Author(s). Published by Elsevier Inc. All rights reserved.
Isaac S, McLachlan AJ, Chaar B.
Objectives: To investigate the current literature on healthcare policies and cost analyses around international Voluntary Assisted Dying (VAD) laws. The study design is a mapping literature review following Preferred-Reporting-Items-for-Systematic-Reviews-and-Meta-Analyses (PRISMA) guidelines.
Methods: Original research articles published between January 1990 to March 2023, investigating the financial cost and healthcare budget effect of VAD laws internationally. Citations were screened for relevance and eligibility, and any non-full-text research that did not explore cost analysis was excluded. The following data sources were screened: MEDLINE, PubMed, EMBASE, CINAHL and any relevant international health authority annual reports were also reviewed.
Results: Of the 2790 screened articles, eight studies met the inclusion criteria and three were included in the mapping review. The reviewed studies included prospective studies, two Canadian and one US. Only one of the Canadian studies provided a cost analysis using data from current VAD laws. All three studies showed VAD laws would reduce healthcare spending, with the US approximating $627million in 1995. Canada approximating $17.1 to $77.1million in 2017 and $86.9 to $149.0million in 2021, overall, leading to an average percentage reduction in costs of approximately 87% compared to original costs of end-of-life care.
Conclusion: This review identifies a scarcity in cost-analysis literature and provides a summary of the latest international VAD laws, from which a potential cost reduction is apparent. The absence of retrospectively collated financial VAD data highlights a need for future research to inform policymakers of the economic factors affecting current policies with a need for annual fiscal reports and to optimise future legislative frameworks internationally.
© 2024. The Author(s).
Davies N, Sampson EL, Aworinde J, Gillam J, Kenten C, Moore K, et al.
Background: People with dementia have complex palliative care needs that are often unmet, including physical and psycho-social needs. It is essential to empower people with dementia, family carers and professionals to better assess and manage care needs. We aimed to co-design a palliative dementia care Framework delivered through a digital app to support holistic assessment and decision making for care in the community and care homes—the EMBED-Care Framework.
Methods: A systematic co-design approach was adopted to develop the EMBED-Care Framework across three stages: 1) Framework analysis to synthesise data from preceding evidence reviews, large routine clinical data and cohort studies of unmet palliative dementia care need; 2) Co-design using iterative workshops with people with dementia, family carers and health and social care professionals to construct the components, design of the app and implementation requirements; and 3) User testing to refine the final Framework and app, and strengthen use for clinical practice and methods of evaluation.
Results: The Framework was co-designed for delivery through an app delivered by aTouchAway. It comprised five main components: 1) holistic assessment of palliative care needs using the Integrated Palliative care Outcome Scale-Dementia (IPOS-Dem); 2) alert system of IPOS-Dem scores to highlight unmet needs; 3) IPOS-Dem scores and alerts enable shared decision making between the practitioner, patient and/or carer to support priority setting and goals of care; 4) evidence-informed clinical decision support tools automatically linked with identified needs to manage care; and 5) Training package for users incorporating face-to-face sessions, clinical champions who received additional face-to-face sessions, animated videos and manual covering the main intervention components and email and telephone support from the research team.
McLaughlan R.
Abstract: Following a 3-year long research project that gathered 146 views, including those of palliative care patients, family members, medical staff, administrators, architects and government representatives, this paper explores the hypothesis that motivated this work; a hunch that the built environment affects us most during times of intense vulnerability. Of these 146 people, only a small handful could provide insight relative to the experience of occupying hospital spaces as a loved one nears the end of life. This article honours these stories and discusses them in relation to my own observations and experiences. The article is thus part observation, part participant interview, part autoethnography. Findings already published from the broader study have spoken to the importance of fresh air, access to nature, spaces for spending time with family, as well as alone, and ensuring people feel comfortable to enact rituals of home within the hospital. Yet the accounts discussed here are different. They speak to the subtle ways that hospital environments communicate when emotions are raw, and people are at their most exhausted. They speak to the ways that aesthetics are felt; and make evident that notions of homeliness must encompass far more at the end of life. A sense of welcome is not a nicety but a need, as is comfort, and what might be termed ‘imaginative respite’—the idea that the built environment might somehow alleviate the focus on an unbearable reality. These accounts speak to the difficulty of navigating grief, and a hopeful expectation that the built environment might somehow soften the edges of this experience. In focusing on these stories, this article contributes a deeper understanding of what is really at stake when we design for palliative care.
Last updated 30 April 2024