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.
O'Callaghan C, Brooker J, Tissera S, Samankula D, Healy B, Healy K, et al.
Context: Mesothelioma is a rare, incurable, and aggressive cancer and "patient-reported outcome" (PRO) data from people living with mesothelioma (PLM) are lacking.
Objectives: To examine PLM's views about, and cognitive processes whilst answering, a draft quality of life and care survey, to inform survey refinements and implementation into the Victorian Mesothelioma Outcome Registry (VMOR), Australia.
Methods: Constructivist (qualitative) and co-designed study. An expert-developed draft PRO survey comprised the: EORTC QLQ-C30 health-related quality of life question-set, Australian Hospital Patient Experience Question Set (AHPEQS), and demographic / mesothelioma background questions. Telephone semi-structured and "think aloud" interviews examined PLM's survey views and cognitive processes during responses. Concurrent inductive thematic analysis (survey views) and deductive content analysis (cognitive processes) proceeded.
Results: PLM believed that the survey would produce information important for improving PLM healthcare but made many content and layout suggestions to reduce respondent confusion, inappropriate answers, and burden. Free-text response options were strongly recommended. Survey content was generally nondistressing but could elicit challenging memories and need for support. Several PLM displayed challenges in executing cognitive processes during survey responses, notably on whether EORTC-QL30 referred to general or mesothelioma-only related health and which hospital care experience the AHPEQS referred to.
Conclusion: A refined co-designed VMOR PRO survey should yield patient-meaningful qualitative and quantitative evidence to guide the Registry's leadership in what issues are important to patients and their clinical team. While co-designed "viewpoint seeking" and cognitive interviewing studies can improve valid survey outcomes, PRO responses may also be affected by extraneous circumstances, including comorbidities.
Virdun C, Jones L, Singh GK, Yates P, Phillips JL, Mudge A.
Background: Optimising hospital care to align with what matters most for people living with advanced serious illness is a global priority area for improvement. Collection and feedback of patient reported experience measures (PREMs) is one potential method to inform improvements. This study used the integrated Promoting Action on Research implementation in Health Services (i-PARIHS) framework to inform the implementation of a complex intervention that included collection and feedback of PREM data and facilitation to empower ward-based quality improvements for inpatients with advanced serious illness.
Methods: A single-site pre-post quality improvement study within a large Australian hospital. The intervention titled Listen, Empower and Act to improve Palliative care ('LEAP' bundle') included three phases: 'Listen' - collecting and analysing patient (PREM) and clinician perspectives to understand current care experience and local context; 'Empower' - collating PREM feedback and facilitating local stakeholder engagement to identify and prioritise areas for improvement; and 'Act' - facilitating clinician led innovation development and implementation informed and monitored by continuing PREM collection and feedback. Intervention fidelity was summarised descriptively from field notes and meeting records. The primary effectiveness outcome was change in 'very good' experiences over time, reported from an eight-question validated PREM designed for inpatients with serious illness (consideRATE). Analysis used mixed binary logistic regression with time period as fixed effect and ward as random effect.
Results: The three participating wards completed the intervention with some adaptations, and each implemented different innovations. The proportion of 'very good' responses showed a statistically significant increase for all consideRATE questions in intervention periods 1-4 compared to period 0 (baseline). All questions except 'attention to feelings' (Q2) were significantly improved by the first measurement period, and all except 'attention to affairs' (Q6) remained significantly higher than baseline during the final measurement period.
Conclusions: Implementation of the LEAP bundle led to improved palliative care experience within three wards in one large tertiary hospital setting. Listening to patients and empowering clinical teams to collectively reflect on data and lead change was crucial to study success and required skilled facilitation. Testing the sustainability, transferability and scalability of the intervention will be important next steps.
Chen X, Goh N, Dunn S, Smallwood N.
Background: Advanced lung diseases are prevalent in women, yet are underrecognized and under-treated due to differing epidemiology and pathophysiology.
Aim: To investigate any gender differences in access to palliative care and end-of-life management for patients with advanced lung diseases.
Methods: A post-hoc analysis was conducted using three datasets that included information regarding the provision of palliative care to patients with advanced lung diseases - chronic obstructive pulmonary disease (COPD), fibrotic interstitial lung diseases (f-ILD) or non-small cell lung cancer (NSCLC) in tertiary and regional hospitals in Victoria, Australia, from 2004 to 2019.
Results: 343 patients with advanced COPD, 67 with f-ILD and 1022 with NSCLC were included. Compared to men, women with COPD (n = 126, 36.7%) were less likely to have smoked (P = 0.024), had significantly worse lung function (P < 0.001), and were more likely to receive non-invasive ventilation at end of life (P = 0.021). Women with fibrotic ILDs (n = 30, 44.8%) had significantly worse lung function (P < 0.001) and were more likely to experience exacerbations during their last two years of life (P < 0.001). Women with NSCLC (n = 457, 44.7%) were significantly younger (P< 0.001), less likely to have smoked (P < 0.001) or had asbestos exposure (P < 0.001). There were no significant differences between men and women with advanced lung diseases regarding referral to palliative care services (P = 0.369), hospital place of death (P = 0.915), or end-of-life management.
Conclusions: Despite differences in lung function, exacerbations and targeted therapies, men and women with advanced lung diseases received equal access to symptom palliation and palliative care services towards the end of life.
Corfield J, Gooiker H, Benson M, Bhagat S.
Objectives: Assisted dying and palliative care represent distinct approaches to addressing the needs of patients with advanced, progressive, and life-limiting illness. Although 5 years have passed since the Voluntary Assisted Dying (VAD) Act was passed in Victoria (Australia), little is known about the VAD and palliative care interface in clinical practice. This retrospective case series examined patients who requested VAD and received inpatient specialist palliative care (SPC).
Methods: Retrospective case series of patients admitted to a single-site public palliative care unit (PCU) between June 2019 and June 2024, who had enquired about or requested VAD at any point in time.
Results: 6% of patients admitted to the PCU enquired about or requested VAD at any point in time; 2% raised VAD during their PCU admission, while the remaining patients were admitted with existing requests made in other healthcare settings. A small proportion of patients had VAD requests made by caregivers or had statements misinterpreted as VAD requests. Requests for VAD were made to palliative care professionals (50%) across multiple settings where palliative care is delivered. Most patients (44%) did not progress past an initial request for VAD, and 32% made requests in their final 2 weeks of life. Four patients administered the VAD substance and died while in the PCU. In the PCU, patients discussed VAD with their treating team (number of documented conversations ranging from 0 to 25 during admission).
Conclusions: This case series highlights a tangible intersection between SPC and VAD in that patients enquired about and requested VAD to palliative care teams, and in the PCU, they discussed and completed VAD. Implications for SPC will be discussed.
Ee C, Kandagor B, Paterson C, Vuong K.
Purpose: General Practitioners (GPs) play a crucial role across the cancer continuum, from prevention and early detection to end-of-life care. GPs provide comprehensive care that addresses a broad spectrum of health issues rather than a specific disease. Elements such as person-centeredness, continuity of care and whole-person care define the specialty of general practice. Other characteristics, such as expertise in managing uncertainty, undifferentiated illness and complexity, care coordination and teamwork, facilitate its evolution as a specialty.
Procedures: This paper uses the Caring Life-Course Theory as a theoretical framework to discuss the role of GPs in cancer care. We explore the barriers and enablers of providing optimal care in general practice for people diagnosed with cancer on an micro-, meso- and macro-level using the Caring Life-Course Theory.
Findings: The fundamentals of care framework aligns with the key characteristics of general practice namely first contact care, comprehensive care, continuity of care, person-centeredness and whole-person care. General practice is underpinned by a long-term therapeutic partnership with the patient, the ability to meet a range of care needs simultaneously, and an understanding of the context in which care is taking place. GPs provide care across the life course, facilitate self-care, care from others and care for others, assess care needs at transitions during the cancer continuum, and maintain a detailed care biography of the patient.
Conclusions: Adequate funding of longer consultations to facilitate the delivery of complex care, and expansion of multidisciplinary primary care teams, is required to sustain the delivery of quality cancer care in general practice.
Implications for nursing practice: There is significant opportunity to enhance the role of primary care nursing in delivery of cancer care in general practice, but this must be supported by enablers across all levels of care delivery.
Last updated 30 April 2024