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.
Davis C, Mokari-Manshadi N, De Menezes Caceres V, Russell P, Gilbert T, Hedger S, et al.
Objectives: Persistent and significant swallowing impairment can occur in individuals with dementia. Determining prognosis and establishing realistic goals of care in this population is complex and comfort feeding may be recommended. This study aimed to establish evidence relating to patient outcomes following recommendation of comfort feeding to aid informed decision making.
Design: A multi-centre, retrospective audit was conducted for a two-year period to establish the survival and readmission rates for hospitalised people with dementia, following recommendation of a comfort feeding plan.
Setting: The study was conducted at three acute care hospitals in Adelaide, South Australia.
Participants: A total of 163 participants were included, 90 male and 73 female, with a median age of 88 years.
Measurements: Mortality within 30 and 90 days of admission and readmission rates within 30 days of discharge were calculated.
Results: Forty-two percent of participants died during the admission during which a comfort feeding plan was recommended. Overall median survival time and one month survival was 13 days and 25%, respectively. Readmission rates were low (7.4% of those discharged). Comfort feeding recommendations aligned with dysphagia severity and those for whom Nil By Mouth (NBM) or ice chips only were recommended were at highest risk of dying in hospital, those recommended thickened fluids +/- ice chips were most likely to be alive 30 days after their original admission date.
Conclusion: Dementia and comfort feeding were associated with high mortality rates, high rates of discharge to a supportive care facility and low readmission rates. Dysphagia severity associated with the consistency of fluids recommended.
Copyright © 2024 The Authors. Published by Elsevier Masson SAS.. All rights reserved.
Marshall C, Virdun C, Phillips JL.
Background: Almost half the world's population lives in rural areas. How best to provide palliative care to rural populations is unclear. Privileging rural patient and family voices about their experiences of receiving care delivered via rural palliative care models is necessary.
Aim: To identify the key palliative care elements that rural patients with palliative care needs and their families perceive to be critical to receiving the care and support they need to live well.
Design and data sources: A systematic review and meta-synthesis registered with Prospero (CRD42020154273). Three databases were searched in June 2024. Raw qualitative data were extracted and analysed using Thomas and Harden's three-stage thematic synthesis methodology. Findings reported according to the PRISMA statement.
Results: Of the 10,834 identified papers, 11 met the inclusion criteria. Meta-synthesis of extracted, raw quotes (n = 209) revealed three major themes: (1) Honouring the patient's existing relationship with their General Practitioner (GP); (2) strategically timed access to specialist services, clinicians and equipment is critical; and (3) a need to feel safe, prepared and supported.
Conclusion: The strategic inclusion of specialists alongside primary care providers is integral to optimising rural palliative care models. General Practioners are central to these models, through being embedded in their communities and as the conduit to specialist palliative care services. Rural palliative care patients and families value responsive care, trajectory signposting, effective communication, 24/7 support and recognise the value of virtual health. Globally, positive public policy and funding is critical to ensuring access to GP-led, specialist-supported, rural palliative care models.
Matthys A, Cash B, Moorhead B.
Objectives: To critically examine which stakeholders are participating in voluntary assisted dying (VAD) research, to identify the representation of Australians living with dementia.
Methods: A scoping review of peer-reviewed literature to examine which stakeholders are represented in Australian VAD research was conducted. This review was informed by the Arksey and O'Malley Framework for Scoping Reviews, and the Preferred Reporting Items for Scoping Reviews (PRISMA-ScR). Searches were conducted systematically across key academic databases to gather Australian research articles written in English that were published between 2017 and August 2023.
Results: After screening, 21 publications formed the dataset. Of the 21 publications, none of them represented Australians living with dementia. The voice of one person living with a terminal illness was included in a study of care partners, and four studies explored the views of community members. The most dominant voices in the dataset were health-care practitioners, who were represented in 16 studies.
Conclusions: Australian VAD research is a contested space where all stakeholders with a relevant contribution to policy and practice must be represented in contemporary Australian research. As living experience experts with a wealth of experiential knowledge to contribute, the voices of people living with dementia need to be represented in future Australian VAD research through inclusive research design, to ensure a greater balance in stakeholder representation across the VAD literature.
© 2024 The Author(s). Australasian Journal on Ageing published by John Wiley & Sons Australia, Ltd on behalf of AJA Inc’.
Sluiter A, Cazzolli R, Jaure A, Scholes-Robertson N, Craig JC, Johnson DW, et al.
Background: Many patients with chronic kidney disease (CKD) experience loneliness and social isolation, which are associated with a higher risk of mortality, morbidity, and poor mental health. We aimed to describe the perspectives of patients with CKD and their caregivers on loneliness and social isolation, to inform strategies to increase social participation.
Methods: A secondary analysis of qualitative data from the Standardized Outcomes in Nephrology (SONG) initiative dataset (36 focus groups, three Delphi surveys and seven consensus workshops) was conducted. We extracted and thematically analyzed data from patients with CKD, including those receiving hemodialysis or peritoneal dialysis and those with a kidney transplant, as well as their caregivers, on the perspectives and experiences of loneliness and social isolation.
Results: Collectively the studies included 1261 patients and caregivers from 25 countries. Six themes were identified: restricted by the burdens of disease and treatment (withdrawing from social activities due to fatigue, consumed by the dialysis regimen, tethered to treatment, travel restrictions); external vulnerability (infection risk, anxiety of dining out); diminishing societal role (grieving loss of opportunities, social consequences of inability to work); fending for oneself in healthcare (no one to relate to, lost in uncertainty, unmet psychosocial needs); undermining self-esteem (unable to engage in activities which previously defined self, shame and self-consciousness about appearance, hindering confidence for intimate relationships); and feeling ostracized (disconnected by family and friends, fear of stigma and being misunderstood, guilt of burdening others).
Conclusions: For patients with CKD and their caregivers, social participation is substantially impaired by the burden of CKD and its treatment, and fear of risks to health such as infection. This undermines patient and caregiver mental health, particularly self-esteem and sense of belonging. Additional interventions are needed to improve social connections among people with CKD and their caregivers.
Copyright © 2024 by the American Society of Nephrology.
Wong AK, Klepstad P, Somogyi AA, Vogrin S, Rubio J, Le B, et al.
Background: The influence of pharmacogenomics on opioid response, particularly with COMT (rs4680) and OPRM1 (rs1799971) variants, has been studied individually and in combination. However, most studies are in a noncancer context and not all their possible variant combinations have been examined.
Objectives: This study examined COMT (rs4680) and OPRM1 (rs1799971), and their allele combinations, in advanced cancer to examine associations with pain scores, opioid dose, and adverse effects.
Setting/Subjects: This multicenter prospective cohort study recruited patients receiving opioids for advanced cancer pain in Melbourne, Australia. Clinical data (demographics, opioids), validated instruments (pain and adverse effects), and blood (DNA) were collected. Descriptive analyses were used. Univariate and multivariate logistic regression analyses were used to evaluate associations between clinical outcomes (opioid dose, pain, adverse effects) and genotypes of interest.
Results: Fifty-four participants were recruited to the study. Those with COMT A allele required lower opioid doses [130 mg (interquartile range [IQR] 67.5,230) versus 180 mg (IQR 55,322.5), p = 0.047] and experienced greater adverse effects [sickness response aOR (adjusted odds ratio) 7.1 (95% CI 1.51,33.41), p = 0.01]. Those with the COMT GG/OPRM1 G allele combination required higher opioid doses [322.5 mg (IQR 264,360) versus 125 mg (65,225), (p = 0.04)]. Those with COMT AG/OPRM1 AA experienced higher average pain [aOR 1.55 (95% CI 1.03, 2.33), p = 0.04] and moderate-severe nausea [aOR 5.47 (95% CI 1.35, 22.21), p = 0.02] but reduced drowsiness [aOR 0.25 (95% CI 0.06, 1.02), p = 0.05].
Conclusions: Patients with cancer with the COMT alternate (A) allele have greater sickness response adverse effects, which may be responsible for the lower opioid doses observed. Significant results of two new COMT/OPRM1 genotype combinations are presented that have not previously been studied, with plausible phenotype descriptions suggested.
Last updated 30 April 2024