Professor Meera Agar is a palliative medicine physician, with a particular interest in the supportive care needs of people suffering from advanced illness on the brain.
Meera leads a clinical research portfolio at UTS, including clinical trials and health service evaluation. She led a world-first clinical trial of antipsychotics in delirium and is leading a NSW Government-funded trial of the use of medicinal cannabis for the terminally ill.
A Fellow of the Royal Australasian College of Physicians, Fellow of the Australasian Chapter of Palliative Medicine and clinician scientist, she holds a Master in Palliative Care. Her doctorate was awarded in the area of delirium in advanced illness.
Her research and teaching have won numerous awards, including an Australian Learning & Teaching Council Citation, an Australian Award for University teaching and the European Association for Palliative Care Early Career Researcher Award.
President, Australian and New Zealand Society of Palliative Medicine
Member, Australasian Chapter of Palliative Medicine Committee, Royal Australasian College of Physicians
Board Member, European Delirium Association
Member, Australasian Delirium Association Management Committee
Choosing Wisely Australia Advisory Board
Scientific committee - Psycho-oncology cooperative research group (PoCOG)
Scientific committee - cooperative trials group for neuro-oncology (COGNO)
South West Sydney Human Research Ethics Committee
Can supervise: YES
- Palliative care
- Supportive care for people with brain tumours
- Advanced dementia
- Clinical Trials
- Anorexia cachexia
- Sleep disturbance in advanced illness
- Quality use of medicines at the end of life
- Geriatric Oncology
Assareh, H, Stubbs, JM, Trinh, LTT, Greenaway, S, Agar, M & Achat, HM 2019, 'Variations in hospital inpatient palliative care service use: a retrospective cohort study.', BMJ supportive & palliative care.View/Download from: Publisher's site
OBJECTIVE:Use of palliative care in hospitals for people at end of life varies. We examined rate and time of in-hospital palliative care use and associated interhospital variations. METHODS:We used admissions from all hospitals in New South Wales, Australia, within a 12-month period, for a cohort of adults who died in 73 public acute care hospitals between July 2010 and June 2014. Receiving palliative care and its timing were based on recorded use. RESULTS:Among 90696 adults who died, 27% received palliative care, and the care was initiated 7.6 days (mean; SD: 3.3 days) before death. Over the 5-year period, the palliative care rate rose by 58%, varying extent across chronic conditions. The duration of palliative care before death declined by 7%. Patient (demographics, morbidities and service use) and hospital factors (size, location and availability of palliative care unit) explained half of the interhospital variation in outcomes: adjusted IQR in rate and duration of palliative care among hospitals were 23%-39% and 5.2-8.7 days, respectively. Hospitals with higher rates often initiated palliative care earlier (correlation: 0.39; p<0.01). CONCLUSION:Despite an increase over time in the palliative care rate, its initiation was late and of brief duration. Palliative care use was associated with patient and hospital characteristics; however, half of the between hospital variation remained unexplained. The observed suboptimal practices and variability indicate the need for expanded and standardised use of palliative care supported by assessment tools, service enhancement and protocols.
BACKGROUND:Internationally, use of lidocaine infusions to treat cancer pain varies by center. Existing systematic reviews do not adequately inform use of lidocaine in cancer pain. OBJECTIVE:To assess the effects of systemic sodium channel blockers on cancer pain in adults, review the dose protocols for administration, and assess toxicity. DESIGN:Databases CENTRAL, MEDLINE, Embase, LILACS, CareSearch, and OpenGrey were searched from inception to 2016. Conference abstracts and reference lists were handsearched, and the lead investigators of included trials and Australian manufacturers were contacted. Included studies were randomized controlled trials evaluating one or more of lidocaine via intravenous or subcutaneous route, or mexiletine, flecainide, or tocainide via oral route; delivered at a site distant to the pain locus. The methodological quality of studies was assessed using the "risk of bias" domain-based evaluation by Jadad. Protocol is available on PROSPERO:CRD42016047092. RESULTS:One positive (n=50) and three negative (n=10 each) crossover trials evaluated lidocaine versus placebo, and one trial (n=16) compared lidocaine with dexmedetomidine. Meta-analysis of pooled data in 60 patients demonstrated a significant benefit of lidocaine infusion of 4-5mg/kg over 30-80 minutes compared with placebo for >50% reduction in cancer pain. Secondary outcomes did not show a significant difference. DISCUSSION:Based on the current available evidence, lidocaine infusion could be considered in refractory cancer pain where agents with level 1 evidence are ineffective. Further research is necessary to understand the protocol and population in which lidocaine may improve cancer pain and capitalize on the promising opportunities identified.
Sopina, E, Chenoweth, L, Luckett, T, Agar, M, Luscombe, GM, Davidson, P, Pond, CD, Phillips, J & Goodall, S 2019, 'Health-related quality of life in people with advanced dementia: a comparison of EQ-5D-5L and QUALID instruments', Quality of Life Research.View/Download from: UTS OPUS or Publisher's site
Assessing health-related quality of life (HRQOL) in people with advanced dementia is challenging but important for informed decision-making. Proxy measurement of this construct is difficult and is often rated lower than self-report. Accurate proxy rating of quality of life in dementia is related to identification of concepts important to the person themselves, as well as the sensitivity of the measures used. The main aim of this study was to compare the performance of two instruments-QUALID and EQ-5D-5L-on measuring HRQOL in people with advanced dementia.
In a sub-study nested within a cluster-RCT we collected proxy(nurse)-completed EQ-5D-5L and QUALID measures at baseline, 3, 6, 9 and 12 months' follow-up for people with advanced dementia, residing in 20 nursing homes across Australia. Spearman's rank correlations, partial correlations and linear regressions were used to assess the relationship between the HRQOL instrument scores and their changes over time.
The mean weight from 284 people for the EQ-5D-5L and QUALID at baseline were 0.004 (95% CI -0.026, 0.033) and 24.98 (95% CI 24.13, 25.82), respectively. At 12 months' follow-up, 115 participants remained alive. EQ-5D-5L weights and QUALID scores at baseline and at follow-up were moderately correlated (r=-0.437; p<0.001 at 12 months). Changes within QUALID and EQ-5D-5L across the same follow-up periods were also correlated (r=-0.266; p=0.005). The regression analyses support these findings.
Whilst these quality of life instruments demonstrated moderate correlation, the EQ-5D-5L does not appear to capture all aspects of quality of life that are relevant to people with advanced dementia and we cannot recommend the use of this instrument for use within this population. The QUALID appears to be a more suitable instrument for measuring HRQOL in people with severe dementia, but is not preference-based, which limits its application in economic evaluations of de...
Sopina, E, Chenoweth, L, Luckett, T, Agar, M, Luscombe, GM, Davidson, PM, Pond, CD, Phillips, J & Goodall, S 2019, 'Health-related quality of life in people with advanced dementia: a comparison of EQ-5D-5L and QUALID instruments.', Quality of Life Research, vol. 28, no. 1, pp. 121-129.View/Download from: UTS OPUS or Publisher's site
Assessing health-related quality of life (HRQOL) in people with advanced dementia is challenging but important for informed decision-making. Proxy measurement of this construct is difficult and is often rated lower than self-report. Accurate proxy rating of quality of life in dementia is related to identification of concepts important to the person themselves, as well as the sensitivity of the measures used. The main aim of this study was to compare the performance of two instruments-QUALID and EQ-5D-5L-on measuring HRQOL in people with advanced dementia.In a sub-study nested within a cluster-RCT we collected proxy(nurse)-completed EQ-5D-5L and QUALID measures at baseline, 3, 6, 9 and 12 months' follow-up for people with advanced dementia, residing in 20 nursing homes across Australia. Spearman's rank correlations, partial correlations and linear regressions were used to assess the relationship between the HRQOL instrument scores and their changes over time.The mean weight from 284 people for the EQ-5D-5L and QUALID at baseline were 0.004 (95% CI -0.026, 0.033) and 24.98 (95% CI 24.13, 25.82), respectively. At 12 months' follow-up, 115 participants remained alive. EQ-5D-5L weights and QUALID scores at baseline and at follow-up were moderately correlated (r=-0.437; p<0.001 at 12 months). Changes within QUALID and EQ-5D-5L across the same follow-up periods were also correlated (r=-0.266; p=0.005). The regression analyses support these findings.Whilst these quality of life instruments demonstrated moderate correlation, the EQ-5D-5L does not appear to capture all aspects of quality of life that are relevant to people with advanced dementia and we cannot recommend the use of this instrument for use within this population. The QUALID appears to be a more suitable instrument for measuring HRQOL in people with severe dementia, but is not preference-based, which limits its application in economic evaluations of dementia care.
Matsuoka, H, Allingham, S, Fazekas, B, Brown, L, Vandersman, Z, Clark, K, Agar, MR & Currow, DC 2019, 'Comparability of the Australian National Cancer Symptom Trials (CST) Group's Study Populations to National Referrals to Non-CST Specialist Palliative Care Services Participating in the Palliative Care Outcomes Collaboration.', Journal of pain and symptom management, vol. 57, no. 1, pp. e9-e14.View/Download from: UTS OPUS or Publisher's site
McCaffrey, N, Flint, T, Kaambwa, B, Fazekas, B, Rowett, D, Currow, DC, Hardy, J, Agar, MR, Quinn, S & Eckermann, S 2019, 'Economic evaluation of the randomised, double-blind, placebo-controlled study of subcutaneous ketamine in the management of chronic cancer pain.', Palliative medicine, vol. 33, no. 1, pp. 74-81.View/Download from: Publisher's site
BACKGROUND::Treating chronic, uncontrolled, cancer pain with subcutaneous ketamine in patients unresponsive to opioids and co-analgesics remains controversial, especially in light of recent evidence demonstrating ketamine does not have net clinical benefit in this setting. AIM::To evaluate the cost-effectiveness of subcutaneous ketamine versus placebo in this patient population. DESIGN AND SETTING::A within-trial cost-effectiveness analysis of the Australian Palliative Care Clinical Studies Collaborative's randomised, double-blind, placebo-controlled trial of ketamine was conducted from a healthcare provider perspective. Mean costs and outcomes were estimated from participant-level data over 5days including positive response, health-related quality of life (HrQOL) measured with the Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal), ketamine costs, medication usage and in-patient stays. RESULTS::There was no statistically significant difference in responder rates, but higher toxicity and worse HrQOL for ketamine participants (mean change -3.10 (standard error (SE) 1.76), ketamine n=93; 4.53 (SE 1.38), placebo n=92). Estimated total mean costs were AU$706 higher per ketamine participant (AU$6608) compared with placebo (AU$5902), attributable to the cost of higher in-patient costs as well as costs of ketamine administration. The results were robust to sensitivity analyses accounting for different medication use costing methods and removal of cost outliers. CONCLUSION::The findings suggest subcutaneous ketamine in conjunction with opioids and standard adjuvant therapy is neither an effective nor cost-effective treatment for refractory pain in advanced cancer patients.
Currow, DC, Ekström, M, Louw, S, Hill, J, Fazekas, B, Clark, K, Davidson, PM, McDonald, C, Sajkov, D, McCaffrey, N, Doogue, M, Abernethy, AP & Agar, M 2019, 'Sertraline in symptomatic chronic breathlessness: a double blind, randomised trial.', European Respiratory Journal, vol. 53, no. 1.View/Download from: Publisher's site
Does sertraline provide symptomatic relief for chronic breathlessness in people with advanced disease whose underlying cause(s) are optimally treated?223 participants with chronic breathlessness (modified Medical Research Council breathlessness scale 2) who had optimal treatment of underlying cause(s) were randomised 1:1 to sertraline 25-100mg (titrated upwards over 9days) or placebo for 4weeks. The primary outcome was the proportion who had an improvement in intensity of current breathlessness >15% from baseline on a 100-mm visual analogue scale.The proportion of people responding to sertraline was similar to placebo for current breathlessness on days 26-28 (OR 1.00, 95% CI 0.71-1.40) and for other measures of breathlessness. Quality of life in the sertraline arm had a higher likelihood of improving than in the placebo arm over the 4weeks (OR 0.21, 95% CI 0.01-0.41; p=0.044). No differences in performance status, anxiety and depression, or survival were observed. Adverse event rates were similar between arms.Sertraline does not appear to provide any benefit over placebo in the symptomatic relief of chronic breathlessness in this patient population.
Lovell, M, Birch, M-R, Luckett, T, Phillips, J, Davidson, PM, Agar, M & Boyle, F 2019, 'Screening and Audit as Service-Level Strategies to Support Implementation of Australian Guidelines for Cancer Pain Management in Adults: A Feasibility Study.', Pain Management Nursing.View/Download from: UTS OPUS or Publisher's site
BACKGROUND:Pain in people with cancer is common but often under-recognized and under-treated. Guidelines can improve the quality of pain care, but need targeted strategies to support implementation. AIM:To test the feasibility of two service-level strategies for supporting guideline implementation: a screening system and medical record audit. DESIGN:Multimethods. SETTING:One oncology outpatient service, and one palliative care outpatient and inpatient service. PARTICIPANTS:Patients with advanced cancer. METHODS:Patients were screened in the waiting room with a modified version of the Edmonton Symptom Assessment System-revised either electronically or in paper-based format. Feasibility indicated the percentage of patients successfully screened from the total number attending the services. An audit assessed adherence to key indicators of pain assessment and management. Feasibility thresholds were set at 75% incidence for screening and a median of 30 minutes per patient for audit. RESULTS:Of 452 patient visits, 95% (n = 429) were successfully screened, 34% (n = 155) electronically and 61% (n = 274) paper-based. Electronic pain screening was technically challenging and time-intensive for nurses. Thirty-one patients consented to have their records audited. The median audit time was 37.5 minutes (range 10-120 minutes). Variability arose from the number and type of record (outpatient or inpatient). Adherence to indicators varied from 63% (pain assessment at first presentation) to 94% (regular pain assessment and medication prescribed at regular intervals). CONCLUSIONS:This study confirmed the need to implement evidence-based guidelines for cancer pain and generated useful insights into the feasibility of pain screening and audit.
White, KM, Agar, MR & Currow, DC 2019, 'Assessing the exertion required to induce breathlessness in a population with advanced cancer: matching measures to the level of physical function.', BMC palliative care, vol. 18, no. 1, p. 4.View/Download from: Publisher's site
BACKGROUND:The aim of the study was to assess four evidence-based assessments utilising exercise challenges that induce breathlessness, each with progressively less demanding levels of exertion, which can be tailored to people with a range of functional capabilities in the setting of advanced cancer for research studies. Functional cut off points for these assessments have not previously been defined. METHODS:A cross sectional study of four exercise tests attempted by all participants: 6min walk test (6MWT); (derived) 2min walk test (2MWT); arm exercises; and reading numbers aloud. Performance status (Australia-modified Karnofsky Performance Status (AKPS)), baseline breathlessness using the modified Medical Research Council (mMRC) breathlessness scale, and a visual analogue scale of intensity and unpleasantness of breathlessness were measured. Co-morbidity was codified using the Charlson Co-morbidity Index. Percentage of people completing each test by AKPS level of function and baseline mMRC breathlessness scores were quantified. RESULTS:In the 68 participants, poorer function decreased the proportion of people able to complete the exercise tests. For completion rates 80%, of 6MWT and 2MWT, only people with an AKPS 70-90 had completion. For arm exercises, this included people with an AKPS as low as 50; and for reading numbers, it included people with an AKPS of 40 but not below. CONCLUSIONS:Walking tests have poor utility in people with high levels of functional impairment. For people with high levels of dependence, reading numbers should be used in evaluating exercise-induced breathlessness in research studies. These data also suggest that people's exertional limitations have been under-estimated as cancer progresses.
Currow, DC, Agar, M & Ekström, M 2019, 'Sertraline or placebo in chronic breathlessness? Lessons from placebo research.', The European respiratory journal, vol. 53, no. 1.View/Download from: Publisher's site
Hosie, A, Phillips, J, Lam, L, Kochovska, S, Noble, B, Brassil, M, Kurrle, SE, Cumming, A, Caplan, GA, Chye, R, Le, B, Ely, EW, Lawlor, PG, Bush, SH, Davis, JM, Lovell, M, Brown, L, Fazekas, B, Cheah, SL, Edwards, L & Agar, M 2019, 'Multicomponent non-pharmacological intervention to prevent delirium for hospitalised people with advanced cancer: study protocol for a phase II cluster randomised controlled trial.', BMJ open, vol. 9, no. 1, pp. e026177-e026177.View/Download from: UTS OPUS or Publisher's site
INTRODUCTION:Delirium is a significant medical complication for hospitalised patients. Up to one-third of delirium episodes are preventable in older inpatients through non-pharmacological strategies that support essential human needs, such as physical and cognitive activity, sleep, hydration, vision and hearing. We hypothesised that a multicomponent intervention similarly may decrease delirium incidence, and/or its duration and severity, in inpatients with advanced cancer. Prior to a phase III trial, we aimed to determine if a multicomponent non-pharmacological delirium prevention intervention is feasible and acceptable for this specific inpatient group. METHODS AND ANALYSIS:The study is a phase II cluster randomised wait-listed controlled trial involving inpatients with advanced cancer at four Australian palliative care inpatient units. Intervention sites will introduce delirium screening, diagnostic assessment and a multicomponent delirium prevention intervention with six domains of care: preserving natural sleep; maintaining optimal vision and hearing; optimising hydration; promoting communication, orientation and cognition; optimising mobility; and promoting family partnership. Interdisciplinary teams will tailor intervention delivery to each site and to patient need. Control sites will first introduce only delirium screening and diagnosis, later implementing the intervention, modified according to initial results. The primary outcome is adherence to the intervention during the first sevendays of admission, measured for 40 consecutively admitted eligible patients. Secondary outcomes relate to fidelity and feasibility, acceptability and sustainability of the study intervention, processes and measures in this patient population, using quantitative and qualitative measures. Delirium incidence and severity will be measured to inform power calculations for a future phase III trial. ETHICS AND DISSEMINATION:Ethical approval was obtained for all four sites. Trial r...
Smith, TA, Agar, M, Jenkins, CR, Ingham, JM & Davidson, PM 2018, 'Experience of acute noninvasive ventilation-insights from 'Behind the Mask': a qualitative study.', BMJ Supportive and Palliative Care.View/Download from: UTS OPUS or Publisher's site
Non-invasive ventilation (NIV) is widely used in the management of acute and acute-on-chronic respiratory failure. Understanding the experiences of patients treated with NIV is critical to person-centred care. We describe the subjective experiences of individuals treated with NIV for acute hypercapnic respiratory failure.Qualitative face-to-face interviews analysed using thematic analysis.Australian tertiary teaching hospital.Individuals with acute hypercapnic respiratory failure treated with NIV outside the intensive care unit. Individuals who did not speak English or were unable or unwilling to consent were excluded.13 participants were interviewed. Thematic saturation was achieved. Participants described NIV providing substantial relief from symptoms and causing discomfort. They described enduring NIV to facilitate another chance at life. Although participants sometimes appeared passive, others expressed a strong conviction that they knew which behaviours and treatments relieved their distress. Most participants described gaps in their recollection of acute hospitalisation and placed a great amount of trust in healthcare providers. All participants indicated that they would accept NIV in the future, if clinically indicated, and often expressed a sense of compulsion to accept NIV. Participants' description of their experience of NIV was intertwined with their experience of chronic disease.Participants described balancing the benefits and burdens of NIV, with the goal of achieving another chance at life. Gaps in recall of their treatment with NIV were frequent, potentially suggesting underlying delirium. The findings of this study inform patient-centred care, have implications for the care of patients requiring NIV and for advance care planning discussions.
Meagher, D, Agar, MR & Teodorczuk, A 2018, 'Debate article: Antipsychotic medications are clinically useful for the treatment of delirium', International Journal of Geriatric Psychiatry, vol. 33, no. 11, pp. 1420-1427.View/Download from: UTS OPUS or Publisher's site
© 2017 John Wiley & Sons, Ltd. Prescribing of antipsychotic medications for patients with delirium remains controversial. Concerns exist that these vulnerable and frail patients may be prescribed antipsychotics inappropriately as a substitute for non-pharmacological approaches when identifiable causes are not found or they challenge ward processes. Moreover, recent evidence suggests that antipsychotics may cause more harm than good in the palliative care patient group with delirium. On the other hand, guidelines in the United Kingdom and the Netherlands support prescribing of antipsychotics in certain circumstances, and a large European survey has revealed that antipsychotics tend to be prescribed first line for hyperactive delirium. Never before, therefore, is there a greater need to examine whether indeed these medications are clinically useful for the treatment of delirium. With this in mind, evidence-based arguments for and against prescribing antipsychotics for the treatment of delirium are presented in this debate article. The paper concludes with a moderation piece to help guide clinical practice.
Smith, AB, Agar, M, Delaney, G, Descallar, J, Dobell-Brown, K, Grand, M, Aung, J, Patel, P, Kaadan, N & Girgis, A 2018, 'Lower trial participation by culturally and linguistically diverse (CALD) cancer patients is largely due to language barriers.', Asia-Pacific Journal of Clinical Oncology, vol. 14, no. 1, pp. 52-60.View/Download from: UTS OPUS or Publisher's site
Clinical trials play a critical role in advancing cancer care, but international research shows that few cancer patients, particularly culturally and linguistically diverse (CALD) patients, participate in trials. This limits generalizability of trial results and increases health disparities. This study aimed to establish rates and correlates of trial participation among CALD patients in South Western Sydney Local Health District (SWSLHD), a highly culturally diverse area.Data from all cancer patients diagnosed and/or treated in SWSLHD from January 2006 to July 2016 were analyzed retrospectively. The primary outcome was trial enrolment among patients born in non-English speaking countries (CALD) versus English speaking countries (non-CALD). Multivariable logistic regression evaluated CALD status as a predictor of trial participation. Moderators of trial participation by the different CALD groups, namely those whose preferred language was English (CALD-PLE) or was not English (CALD-PLNE), were examined by testing interactions between CALD status and other demographic and clinical variables.A total of 19 453 patients were analyzed (54.9% non-CALD, 16.5% CALD-PLE, 18.5% CALD-PLNE). Overall, 7.4% of patients were enrolled in a trial. Trial participation was significantly lower in CALD patients than non-CALD patients (5.7% vs 8.4%; odds ratio [OR] = 0.80; 95% confidence interval [CI], 0.69-0.91; P = 0.001). CALD-PLNE patients were less likely to participate in trials than non-CALD (OR = 0.45; 95% CI, 0.36-0.56; P < 0.0001) and CALD-PLE patients (OR = 0.53; 95% CI, 0.67-0.41; P < 0.0001).Limited English proficiency seems particularly unfavorable to trial participation. Development and evaluation of strategies to overcome language barriers (e.g. simplified and translated multimedia participant information materials) is needed.
Sinclair, C, Gersbach, K, Hogan, M, Bucks, RS, Auret, KA, Clayton, JM, Agar, M & Kurrle, S 2018, 'How couples with dementia experience healthcare, lifestyle, and everyday decision-making.', International psychogeriatrics, vol. 30, no. 11, pp. 1639-1647.View/Download from: UTS OPUS or Publisher's site
ABSTRACTObjectives:Recent research has demonstrated the challenges to self-identity associated with dementia, and the importance of maintaining involvement in decision-making while adjusting to changes in role and lifestyle. This study aimed to understand the lived experiences of couples living with dementia, with respect to healthcare, lifestyle, and "everyday" decision-making. DESIGN:Semi-structured qualitative interviews using Interpretative Phenomenological Analysis as the methodological approach. SETTING:Community and residential care settings in Australia. PARTICIPANTS:Twenty eight participants who self-identified as being in a close and continuing relationship (N = 13 people with dementia, N = 15 spouse partners). Nine couples were interviewed together. RESULTS:Participants described a spectrum of decision-making approaches (independent, joint, supported, and substituted), with these approaches often intertwining in everyday life. Couples' approaches to decision-making were influenced by "decisional," "individual," "relational," and "external" factors. The overarching themes of "knowing and being known," "maintaining and re-defining couplehood" and "relational decision-making," are used to interpret these experiences. The spousal relationship provided an important context for decision-making, with couples expressing a history and ongoing preference for joint decision-making, as an integral part of their experience of couplehood. However, the progressive impairments associated with dementia presented challenges to maintaining joint decision-making and mutuality in the relationship. CONCLUSIONS:This study illustrates relational perspectives on decision-making in couples with dementia. Post-diagnostic support, education resources, proactive dyadic interventions, and assistance for spouse care partners may facilitate more productive attempts at joint decision-making by couples living with dementia.
The treatment of symptoms in people with palliative diagnoses begins with meticulous clinical assessment with treatment choice(s) selected based on an understanding of the symptom aetiology and the evidence which underpins its treatment. Increasingly, the merits of palliative care have been established earlier in the disease trajectory where treatment outcomes may include increased survival and maintenance of function. There is strong public support for the availability of medicinal cannabis, particularly for people with palliative diagnoses. There are several areas where there is potential for symptom benefits through modulation of the endocannabinoid system, though clinical data to date has been inconclusive in key symptoms such as pain and nausea, and data from other settings such as chemotherapy-induced nausea and vomiting not readily extrapolated. Ideally exploration of medicinal cannabinoids should occur within a clinical trial to accelerate the evidence base to inform practice. In people with refractory symptoms, the consideration of unregistered products or off-label prescribing should be guided by the potential influences of pharmacokinetic, pharmacodynamic and drug-drug interactions, supported by an informed discussion with the patient, and regular review of net clinical benefit.
Digges, M, Hussein, A, Wilcock, A, Crawford, GB, Boland, JW, Agar, MR, Sinnarajah, A, Currow, DC & Johnson, MJ 2018, 'Pharmacovigilance in Hospice/Palliative Care: Net Effect of Haloperidol for Nausea or Vomiting.', Journal of Palliative Medicine, vol. 21, no. 1, pp. 37-43.View/Download from: UTS OPUS or Publisher's site
Haloperidol is widely prescribed as an antiemetic in patients receiving palliative care, but there is limited evidence to support and refine its use.To explore the immediate and short-term net clinical effects of haloperidol when treating nausea and/or vomiting in palliative care patients.A prospective, multicenter, consecutive case series.Twenty-two sites, five countries: consultative, ambulatory, and inpatient services.When haloperidol was started in routine care as an antiemetic, data were collected at three time points: baseline; 48 hours (benefits); day seven (harms). Clinical effects were assessed using the National Cancer Institute's Common Terminology Criteria for Adverse Events (NCI CTCAE).Data were collected (May 2014-March 2016) from 150 patients: 61% male; 86% with cancer; mean age 72 (standard deviation 11) years and median Australian-modified Karnofsky Performance Scale 50 (range 10-90). At baseline, nausea was moderate (88; 62%) or severe (11; 8%); 145 patients reported vomiting, with a baseline NCI CTCAE vomiting score of 1.0. The median (range) dose of haloperidol was 1.5mg/24 hours (0.5-5mg/24 hours) given orally or parenterally. Five patients (3%) died before further data collection. At 48 hours, 114 patients (79%) had complete resolution of their nausea and vomiting, with greater benefit seen in the resolution of nausea than vomiting. At day seven, 37 (26%) patients had a total of 62 mild/moderate harms including constipation 25 (40%); dry mouth 13 (21%); and somnolence 12 (19%).Haloperidol as an antiemetic provided rapid net clinical benefit with low-grade, short-term harms.
Kochovska, S, Luckett, T, Agar, M & Phillips, JL 2018, 'Impacts on employment, finances, and lifestyle for working age people facing an expected premature death: A systematic review.', Palliative and Supportive Care, vol. 16, no. 3, pp. 347-364.View/Download from: UTS OPUS or Publisher's site
The working ages (25-65 years) are a period when most people have significant work, financial, and family responsibilities. A small proportion of working age people will face an expected premature death from cancer or other life-limiting illness. Understanding the impact an expected premature death has on this population is important for informing support. The current study set out to summarize research describing the effects that facing an expected premature death has on employment, financial, and lifestyle of working age people and their families.A systematic review using narrative synthesis approach. Four electronic databases were searched in July 2016 for peer-reviewed, English language studies focusing on the financial, employment, and lifestyle concerns of working age adults living with an advanced life-limiting illness and/or their carers and/or children.Fifteen quantitative and 12 qualitative studies were included. Two-thirds (n = 18) were focused on cancer. All studies identified adverse effects on workforce participation, finances, and lifestyle. Many patients were forced to work less or give up work/retire early because of symptoms and reduced functioning. In addition to treatment costs, patients and families were also faced with child care, travel, and home/car modification costs. Being younger was associated with greater employment and financial burden, whereas having children was associated with lower functional well-being. Changes in family roles were identified as challenging regardless of diagnosis, whereas maintaining normalcy and creating stability was seen as a priority by parents with advanced cancer. This review is limited by the smaller number of studies focussing on the needs of working age people with nonmalignant disease. Significance of results Working age people facing an expected premature death and their families have significant unmet financial, employment, and lifestyle needs. Comparing and contrasting their severity, timing, and p...
Disalvo, D, Luckett, T, Luscombe, G, Bennett, A, Davidson, P, Chenoweth, L, Mitchell, G, Pond, D, Phillips, J, Beattie, E, Goodall, S & Agar, M 2018, 'Potentially inappropriate prescribing in Australian nursing home residents with advanced dementia: a sub-study of the IDEAL Study', Journal of Palliative Medicine, vol. 21, no. 10, pp. 1472-1479.View/Download from: UTS OPUS
Campbell, R, McCaffrey, N, Brown, L, Agar, MR, Clark, K & Currow, DC 2018, 'Clinician-reported changes in octreotide prescribing for malignant bowel obstruction as a result of an adequately powered phase III study: A transnational, online survey.', Palliative medicine, vol. 32, no. 8, pp. 1363-1368.View/Download from: UTS OPUS or Publisher's site
Translating research evidence into clinical practice often has a long lag time.To determine the impact of a phase III randomised controlled trial on palliative care clinicians' self-reported practice change.Online survey about use of octreotide in managing inoperable malignant bowel obstruction due to cancer or its treatments distributed in November 2016, 2years after the first publication of the study in a peer-reviewed journal. Demographic, self-reported practice and the reasons underpinning this were collected. Responses were aggregated to 'practice modified' or 'practice not modified'. A multinomial regression model explored predictors of practice change.Members of the Australian New Zealand Society of Palliative Medicine.Response rate was 20.8% (106/509): 55.6% were aged >50years, 56.5% were female and 77% had previously prescribed octreotide for this clinical indication. Out of 106 respondents, 52 (49.1%) indicated modified practice (60.9% of those who had previously prescribed octreotide in this setting). In those who reported practice change, most frequently octreotide was now used when other therapies failed; for not changing practice, 'more confirmatory evidence was needed' was most often cited. In the regression model, older age (clinician age=50-59years; relative risk=0.147; 95% confidence interval=0.024-0.918; p=0.04) and having practices with lower proportions of people treated with octreotide (0%-20%; relative risk=0.039; 95% confidence interval=0.002-0.768; p=0.033) predicted greater self-reported practice change.Clinician-reported change in practice in the survey is seen in the majority of respondents. This suggests that there is a cohort of 'early adopters' within palliative care practice as new evidence becomes available.
Luckett, T, Agar, M, DiGiacomo, M, Ferguson, C, Lam, L & Phillips, J 2018, 'Health status of people who have provided informal care or support to an adult with chronic disease in the last 5 years: results from a population-based cross-sectional survey in South Australia.', Australian health review : a publication of the Australian Hospital Association.View/Download from: UTS OPUS or Publisher's site
Support for Australian carers is warranted to ensure their continuing contributions to society and return to productivity after their caring role is completed.
Luckett, T, Phillips, J, Agar, M, Lam, L, Davidson, PM, McCaffrey, N, Boyle, F, Shaw, T, Currow, DC, Read, A, Hosie, A & Lovell, M 2018, 'Protocol for a phase III pragmatic stepped wedge cluster randomised controlled trial comparing the effectiveness and cost-effectiveness of screening and guidelines with, versus without, implementation strategies for improving pain in adults with cancer attending outpatient oncology and palliative care services: the Stop Cancer PAIN trial.', BMC health services research, vol. 18, no. 1, p. 558.View/Download from: UTS OPUS or Publisher's site
BACKGROUND:Pain is a common and distressing symptom in people with cancer, but is under-recognised and under-treated. Australian guidelines for 'Cancer Pain Management in Adults' are available on the Cancer Council Australia Cancer Guideline Wiki. This study aims to evaluate the effectiveness and cost-effectiveness of a suite of guideline implementation strategies for improving pain outcomes in adults with cancer in oncology and palliative care outpatient settings. METHODS:The study will use a stepped-wedge cluster randomised controlled design, with oncology and palliative care outpatient services as the clusters. Patients will be eligible if they are adults with cancer and pain presenting to participating services during the study period. During an initial control arm, services will routinely screen patients for average and worst pain over the past 24 h using a 0-10 numerical rating scale (NRS) and have unfettered access to online guidelines. During the intervention arm, staff at each service will be encouraged to use: 1) a patient education booklet and self-management resource; 2) an online spaced learning cancer pain education module for clinicians from different disciplines; and 3) audit and feedback of service performance on key indices of cancer pain screening, assessment and management. Service-based clinical change champions will lead implementation of these strategies. The trial's primary outcome will be the probability that patients initially screened as having moderate-severe (5/10 NRS) worst pain experience a clinically important improvement one week later, defined as 30% reduction. Secondary outcomes will include patient empowerment and quality of life, carer experience, and cost-effectiveness. For the main analysis, linear mixed models will be used, accounting for clustering and the longitudinal design. Eighty-two patients per service at six services (N=492) will provide >90% power. A qualitative sub-study and analyses of structural and proce...
Laver, K, Cumming, R, Dyer, S, Agar, M, Anstey, KJ, Beattie, E, Brodaty, H, Broe, T, Clemson, L, Crotty, M, Dietz, M, Draper, B, Flicker, L, Friel, M, Heuzenroeder, L, Koch, S, Kurrle, S, Nay, R, Pond, D, Thompson, J, Santalucia, Y, Whitehead, C & Yates, M 2017, 'Evidence-based occupational therapy for people with dementia and their families: What clinical practice guidelines tell us and implications for practice.', Australian Occupational Therapy Journal, vol. 64, no. 1, pp. 3-10.View/Download from: UTS OPUS or Publisher's site
The first evidence-based Clinical Practice Guidelines and Principles of Care for People with Dementia in Australia have been released. The Guidelines detail a number of important evidence-based recommendations for occupational therapists. The aim of this paper is (1) to provide an overview of Guideline development, and (2) to describe the evidence supporting a recommendation for occupational therapy. Common characteristics of effective occupational therapy programmes for people with dementia are described.Guideline development involved adaptation of existing high-quality guidelines developed overseas and 17 systematic reviews to ensure that the most recent high-quality evidence was included. One of the systematic reviews involved examining the evidence for interventions to promote independence in people with dementia. Specifically, we looked at the evidence for occupational therapy and its effect on activities of daily living, quality of life and carer impact.A total of 109 recommendations are included in the Guidelines. Occupational therapy was found to significantly increase independence in activities of daily living and improve quality of life. Effective occupational therapy programmes involve: environmental assessment, problem solving strategies, carer education and interactive carer skills training.Occupational therapists working with people with dementia in community settings should ensure that their time is spent on those aspects of intervention that are shown to be effective.
Bush, SH, Marchington, KL, Agar, M, Davis, DHJ, Sikora, L & Tsang, TWY 2017, 'Quality of clinical practice guidelines in delirium: a systematic appraisal.', BMJ open, vol. 7, no. 3, p. e013809.View/Download from: UTS OPUS or Publisher's site
OBJECTIVE:To determine the accessibility and currency of delirium guidelines, guideline summary papers and evaluation studies, and critically appraise guideline quality. DESIGN:Systematic literature search for formal guidelines (in English or French) with focus on delirium assessment and/or management in adults (18years), guideline summary papers and evaluation studies.Full appraisal of delirium guidelines published between 2008 and 2013 and obtaining a 'Rigour of Development' domain screening score cut-off of >40% using the Appraisal of Guidelines for Research and Evaluation (AGREE II) instrument. DATA SOURCES:Multiple bibliographic databases, guideline organisation databases, complemented by a grey literature search. RESULTS:3327 database citations and 83 grey literature links were identified. A total of 118 retrieved delirium guidelines and related documents underwent full-text screening. A final 21 delirium guidelines (with 10 being >5years old), 12 guideline summary papers and 3 evaluation studies were included. For 11 delirium guidelines published between 2008 and 2013, the screening AGREE II 'Rigour' scores ranged from 3% to 91%, with seven meeting the cut-off score of >40%. Overall, the highest rating AGREE II domains were 'Scope and Purpose' (mean 80.1%, range 64-100%) and 'Clarity and Presentation' (mean 76.7%, range 38-97%). The lowest rating domains were 'Applicability' (mean 48.7%, range 8-81%) and 'Editorial Independence' (mean 53%, range 2-90%). The three highest rating guidelines in the 'Applicability' domain incorporated monitoring criteria or audit and costing templates, and/or implementation strategies. CONCLUSIONS:Delirium guidelines are best sourced by a systematic grey literature search. Delirium guideline quality varied across all six AGREE II domains, demonstrating the importance of using a formal appraisal tool prior to guideline adaptation and implementation into clinical settings. Adding more knowledge translation resources to guidel...
Agar, MR, Lawlor, PG & Quinn, S 2017, 'Efficacy of oral risperidone, haloperidol, or placebo for symptoms of delirium among patients in palliative care: a randomized clinical trial (vol 177, pg 34, 2017)', JAMA INTERNAL MEDICINE, vol. 177, no. 2, pp. 293-293.View/Download from: Publisher's site
Jeon, MS, Dhillon, HM & Agar, MR 2017, 'Sleep disturbance of adults with a brain tumor and their family caregivers: a systematic review.', Neuro-oncology, vol. 19, no. 8, pp. 1035-1046.View/Download from: UTS OPUS or Publisher's site
The high incidence and psychophysiological morbidities of sleep disturbance in cancer have been increasingly recognized. Yet, more detailed understanding of sleep disturbance and options for management have been neglected areas in both clinical care and research. Brain tumor patients have been particularly overlooked. A systematic search of the literature from 1990 to 2015 was performed to review sleep disturbance in adults with primary or secondary brain tumor and their family caregivers. Fifty eligible studies were identified, of which 12 focused on sleep, 37 reported sleep items within a health-related quality of life measure and 1 reported caregivers' sleep. No sleep intervention has been developed or tested for brain tumor patients. Sleep disturbance and somnolence were frequently reported as the most severely rated symptoms within health-related quality of life across the disease course or treatments, along with fatigue. However, sleep-focused studies yielded inconsistent results in small samples of mostly benign brain tumors in long-term remission from total tumor resection. The research using standardized, multifaceted sleep assessments, particularly in patients with malignant brain tumor and caregivers who are undergoing treatment, is seriously lacking. A more systematic examination of sleep disturbance is warranted to inform the development of better symptom management programs in this population.
Rose, L, Agar, M, Burry, LD, Campbell, N, Clarke, M, Lee, J, Siddiqi, N, Page, VJ & Del-COrS group 2017, 'Development of core outcome sets for effectiveness trials of interventions to prevent and/or treat delirium (Del-COrS): study protocol.', BMJ Open, vol. 7, no. 9, p. e016371.View/Download from: UTS OPUS or Publisher's site
INTRODUCTION:Delirium is a common, serious and potentially preventable condition with devastating impact on the quality of life prompting a proliferation of interventional trials. Core outcome sets aim to standardise outcome reporting by identifying outcomes perceived fundamental for measurement in trials of a specific interest area. Our aim is to develop international consensus on two core outcome sets for trials of interventions to prevent and/or treat delirium, irrespective of study population. We aim to identify additional core outcomes specific to the critically ill, acutely hospitalised patients, palliative care and older adults. METHODS AND ANALYSIS:We will conduct a systematic review of published and ongoing delirium trials (1980 onwards) and one-on-one interviews of patients who have experienced delirium and family members. These data will inform Delphi round 1 of a two-stage consensus process. In round 2, we will provide participants their own response, summarised group responses and those of patient/family participants for rescoring. We will randomise participants to receive feedback as proportion scoring the outcome as critical or as group mean responses. We will hold a consensus meeting using nominal group technique to finalise outcomes for inclusion. We will repeat the Delphi process and consensus meeting to select measures for each core outcome. We will recruit 240 Delphi participants giving us 80% power to detect a 1.0-1.5 point (9-point scale) difference by feedback method between rounds. We will analyse differences for subsequent scores, magnitude of opinion change, items retained and level of agreement. ETHICS AND DISSEMINATION:We are obtaining research ethics approvals according to local governance. Participation will be voluntary and data deidentified. Support from three international delirium organisations will be instrumental in dissemination and core outcome set uptake. We will disseminate through peer-reviewed open access publications and...
Nguyen, K-H, Sellars, M, Agar, M, Kurrle, S, Kelly, A & Comans, T 2017, 'An economic model of advance care planning in Australia: a cost-effective way to respect patient choice.', BMC health services research, vol. 17, no. 1, p. 797.View/Download from: UTS OPUS or Publisher's site
Advance care planning (ACP) is a process of planning for future health and personal care. A person's values and preferences are made known so that they can guide decision making at a future time when that person cannot make or communicate his or her decisions. This is particularly relevant for people with dementia because their ability to make decisions progressively deteriorates over time. This study aims to evaluate the cost-effectiveness of delivering a nationwide ACP program within the Australian primary care setting.A decision analytic model was developed to identify the costs and outcomes of an ACP program for people aged 65+ years who were at risk of developing dementia. Inputs for the model was sourced and estimated from the literature. The reliability of the results was thoroughly tested in sensitivity analyses.The results showed that, compared to usual care, a nationwide ACP program for people aged 65+ years who were at risk of dementia would be cost-effective. However, the results only hold if ACP completion is higher than 50% and adherence to ACP wishes is above 75%.A nationwide ACP program in the primary care setting is a cost-effective or cost-saving intervention compared to usual care in a population at-risk of developing dementia. Cost savings are generated from providing treatment and care that is consistent with patient preferences, resulting in fewer hospitalisations and less-intensive care at end-of-life.
Yamaguchi, T, Kuriya, M, Morita, T, Agar, M, Choi, YS, Goh, C, Lingegowda, KB, Lim, R, Liu, RKY, MacLeod, R, Ocampo, R, Cheng, S-Y, Phungrassami, T, Nguyen, Y-P & Tsuneto, S 2017, 'Palliative care development in the Asia-Pacific region: an international survey from the Asia Pacific Hospice Palliative Care Network (APHN).', BMJ Supportive and Palliative Care, vol. 7, pp. 23-31.View/Download from: UTS OPUS or Publisher's site
Although palliative care is an important public healthcare issue worldwide, the current situation in the Asia-Pacific region has not been systematically evaluated.This survey aimed to clarify the current status of palliative care in the Asia-Pacific region.Questionnaires were sent to a representative physician of each member country/region of the Asia Pacific Hospice Palliative Care Network (APHN). The questionnaire examined palliative care service provision, information regarding physician certification in palliative care, the availability of essential drugs for palliative care listed by the International Association for Hospice and Palliative Care (IAHPC) and the regulation of opioid-prescribing practice.Of the 14 member countries/regions of the APHN, 12 (86%) responded. Some form of specialist palliative care services had developed in all the responding countries/regions. Eight member countries/regions had physician certifications for palliative care. Most essential drugs for palliative care listed by the IAHPC were available, whereas hydromorphone, oxycodone and transmucosal fentanyl were unavailable in most countries/regions. Six member countries/regions required permission to prescribe and receive opioids.The development of palliative care is in different stages across the surveyed countries/regions in the Asia-Pacific region. Data from this survey can be used as baseline data for monitoring the development of palliative care in this region.
Collier, A, Breaden, K, Phillips, JL, Agar, M, Litster, C & Currow, DC 2017, 'Caregivers' Perspectives on the Use of Long-Term Oxygen Therapy for the Treatment of Refractory Breathlessness: A Qualitative Study.', Journal of Pain and Symptom Management, vol. 53, no. 1, pp. 33-39.View/Download from: UTS OPUS or Publisher's site
CONTEXT: Despite limited clinical evidence, long-term oxygen therapy (LTOT) is used for the management of refractory breathlessness in people with life-limiting illnesses who are not necessarily hypoxemic. OBJECTIVES: The aim of this study was to understand caregiver factors associated with caring for someone with LTOT from the perspectives and experiences of caregivers themselves. METHODS: The qualitative study used semistructured interviews. The study was conducted in two states in Australia. Participants (n = 20) were self-nominated caregivers of people receiving LTOT for refractory breathlessness in the palliative setting. RESULTS: Data analyses established one overarching theme titled: "Oxygen giveth (something to help caregivers relieve breathlessness) and oxygen taketh away (from patients who lose some autonomy)." The theme captured caregivers' feelings of extreme distress in response to witnessing refractory breathlessness, and oxygen fulfilling several critical and beneficial roles in this context. In parallel, caregivers also explicitly and implicitly articulated several downsides to the use of LTOT. CONCLUSION: Caregivers find caring for someone with refractory breathlessness extremely distressing. The benefits of LTOT are often overestimated, whereas its potential harms are underestimated. As significant stakeholders of people receiving LTOT, caregivers should be provided with opportunities to collaborate with clinicians in evidence-based decision making, efforts should be made to provide them with information and education about the most effective pharmacological and nonpharmacological strategies to manage refractory breathlessness in a palliative care setting including the appropriate use of LTOT to enable them to do so.
Agar, M, Lawlor, P, Quinn, S, Draper, B, Caplan, G, Rowett, D, Sanderson, C, Hardy, J, Le, B, Eckermann, S, McCaffrey, N, Devilee, L, Fazekas, B, Hill, M & Currow, D 2017, 'Efficacy of Oral Risperidone, Haloperidol, or Placebo for Symptoms of Delirium Among Patients in Palliative Care A Randomized Clinical Trial', JAMA Internal Medicine, vol. 177, no. 1, pp. 34-42.View/Download from: Publisher's site
Importance: Antipsychotics are widely used for distressing symptoms of delirium, but efficacy has not been established in placebo-controlled trials in palliative care.
Objective: To determine efficacy of risperidone or haloperidol relative to placebo in relieving target symptoms of delirium associated with distress among patients receiving palliative care.
Design, Setting, and Participants: A double-blind, parallel-arm, dose-titrated randomized clinical trial was conducted at 11 Australian inpatient hospice or hospital palliative care services between August 13, 2008, and April 2, 2014, among participants with life-limiting illness, delirium, and a delirium symptoms score (sum of Nursing Delirium Screening Scale behavioral, communication, and perceptual items) of 1 or more.
Interventions: Age-adjusted titrated doses of oral risperidone, haloperidol, or placebo solution were administered every 12 hours for 72 hours, based on symptoms of delirium. Patients also received supportive care, individualized treatment of delirium precipitants, and subcutaneous midazolam hydrochloride as required for severe distress or safety.
Main Outcome and Measures: Improvement in mean group difference of delirium symptom score (severity range, 0-6) between baseline and day 3. Five a priori secondary outcomes: delirium severity, midazolam use, extrapyramidal effects, sedation, and survival.
Results: Two hundred forty-seven participants (mean [SD] age, 74.9 [9.8] years; 85 women [34.4%]; 218 with cancer [88.3%]) were included in intention-to-treat analysis (82 receiving risperidone, 81 receiving haloperidol, and 84 receiving placebo). In the primary intention-to-treat analysis, participants in the risperidone arm had delirium symptom scores that were significantly higher than those among participants in the placebo arm (on average 0.48 Units higher; 95% CI, 0.09-0.86; P = .02) at study end. Similarly, for those in the haloperidol arm, delirium symptom scores were on average 0.24 Units h...
Luckett, T, Chenoweth, L, Phillips, J, Brooks, D, Cook, J, Mitchell, G, Pond, D, Davidson, P, Beattie, E, Luscombe, G, Goodall, S, Fischer, T & Agar, M 2017, 'A facilitated approach to family case conferencing for people with advanced dementia living in nursing homes: Perceptions of Palliative Care Planning Coordinators and other health professionals in the IDEAL Study', International Psychogeriatrics, vol. 29, pp. 1713-1722.View/Download from: UTS OPUS
Boland, JW, Allgar, V, Boland, EG, Oviasu, O, Agar, M, Currow, DC & Johnson, MJ 2017, 'Effect of Opioids and Benzodiazepines on Clinical Outcomes in Patients Receiving Palliative Care: An Exploratory Analysis.', Journal of Palliative Medicine.View/Download from: UTS OPUS or Publisher's site
BACKGROUND: Medications for symptom management in palliative care have associated, but poorly understood, harms. Drug-related harms have important clinical implications, may impact on patients' compliance and contribute to symptoms. OBJECTIVE: To explore the longitudinal relationship between oral morphine equivalent daily dose (MEDD) and oral diazepam equivalent daily dose (DEDD) with functional, cognitive, and symptom outcomes in patients receiving palliative care. DESIGN: Secondary longitudinal analysis of cancer decedents (n=235) was carried out from a palliative care randomized controlled trial with multiple outcome measures. At each time point, MEDD and DEDD were calculated. Multilevel modeling was used to investigate independent associations between MEDD and DEDD, and cognitive and gastrointestinal symptoms, quality of life (QoL), performance status, and survival. SETTING/SUBJECTS: Participants were recruited from a specialist palliative care program in southern Adelaide, were expected to live 48 hours, had pain in the previous 3 months, and a baseline Folstein Mini-Mental Status Examination score 25. RESULTS: Cognitive and gastrointestinal symptoms, performance status, and QoL worsened over time. In the adjusted multilevel analysis, statistically significant relationships remained between MEDD/DEDD and worsening performance status (p=0.001), DEDD and gastrointestinal effects (p<0.001), MEDD and QoL (p<0.022). CONCLUSIONS: Commonly used palliative medications were associated with deteriorating performance status. The lack of association between MEDD with gastrointestinal or cognitive symptoms underlines that these associations are not inevitable with close attention. This analysis highlights the importance of including other medications as confounders when exploring medication-related harms. An understanding of the risk-benefit balance of medications is needed to maximize net benefits for patients.
Agar, M, Luckett, T, Luscombe, G, Phillips, J, Beattie, E, Pond, D, Mitchell, G, Davidson, P, Cook, J, Brooks, D, Houltram, J, Goodall, S & Chenoweth, L 2017, 'Effects of facilitated family case conferencing for advanced dementia: A cluster randomised clinical trial', PLoS ONE, vol. 12, no. 8, pp. e0181020-e0181020.View/Download from: UTS OPUS
Currow, D, Watts, GJ, Johnson, M, McDonald, CF, Miners, JO, Somogyi, AA, Denehy, L, McCaffrey, N, Eckert, DJ, McCloud, P, Louw, S, Lam, L, Greene, A, Fazekas, B, Clark, KC, Fong, K, Agar, MR, Joshi, R, Kilbreath, S, Ferreira, D, Ekström, M & Australian national Palliative Care Clinical Studies Collaborative (PaCCSC) 2017, 'A pragmatic, phase III, multisite, double-blind, placebo-controlled, parallel-arm, dose increment randomised trial of regular, low-dose extended-release morphine for chronic breathlessness: Breathlessness, Exertion And Morphine Sulfate (BEAMS) study protocol.', BMJ Open, vol. 7, no. 7, pp. 1-19.View/Download from: UTS OPUS or Publisher's site
INTRODUCTION: Chronic breathlessness is highly prevalent and distressing to patients and families. No medication is registered for its symptomatic reduction. The strongest evidence is for regular, low-dose, extended- release (ER) oral morphine. A recent large phase III study suggests the subgroup most likely to benefit have chronic obstructive pulmonary disease (COPD) and modified Medical Research Council breathlessness scores of 3 or 4. This protocol is for an adequately powered, parallel-arm, placebo-controlled, multisite, factorial, block-randomised study evaluating regular ER morphine for chronic breathlessness in people with COPD. METHODS AND ANALYSIS: The primary question is what effect regular ER morphine has on worst breathlessness, measured daily on a 0-10 numerical rating scale. Uniquely, the coprimary outcome will use a FitBit to measure habitual physical activity. Secondary questions include safety and, whether upward titration after initial benefit delivers greater net symptom reduction. Substudies include longitudinal driving simulation, sleep, caregiver, health economic and pharmacogenetic studies. Seventeen centres will recruit 171 participants from respiratory and palliative care. The study has five phases including three randomisation phases to increasing doses of ER morphine. All participants will receive placebo or active laxatives as appropriate. Appropriate statistical analysis of primary and secondary outcomes will be used. ETHICS AND DISSEMINATION: Ethics approval has been obtained. Results of the study will be submitted for publication in peer-reviewed journals, findings presented at relevant conferences and potentially used to inform registration of ER morphine for chronic breathlessness. TRIAL REGISTRATION NUMBER: NCT02720822; Pre-results.
Hosie, A, Agar, M, Lobb, E, Davidson, PM & Phillips, J 2017, 'Improving delirium recognition and assessment for people receiving inpatient palliative care: a mixed methods meta-synthesis.', International journal of nursing studies, vol. 75, pp. 123-129.View/Download from: UTS OPUS or Publisher's site
Delirium is a serious acute neurocognitive condition frequently occurring for hospitalized patients, including those receiving care in specialist palliative care units. There are many delirium evidence-practice gaps in palliative care, including that the condition is under-recognized and challenging to assess.To report the meta-synthesis of a research project investigating delirium epidemiology, systems and nursing practice in palliative care units.The Delirium in Palliative Care (DePAC) project was a two-phase sequential transformative mixed methods design with knowledge translation as the theoretical framework. The project answered five different research questions about delirium epidemiology, systems of care and nursing practice in palliative care units. Data integration and metasynthesis occurred at project conclusion.There was a moderate to high rate of delirium occurrence in palliative care unit populations; and palliative care nurses had unmet delirium knowledge needs and worked within systems and team processes that were inadequate for delirium recognition and assessment. The meta-inference of the DePAC project was that a widely-held but paradoxical view that palliative care and dying patients are different from the wider hospital population has separated them from the overall generation of delirium evidence, and contributed to the extent of practice deficiencies in palliative care units.Improving palliative care nurses' capabilities to recognize and assess delirium will require action at the patient and family, nurse, team and system levels. A broader, hospital-wide perspective would accelerate implementation of evidence-based delirium care for people receiving palliative care, both in specialist units, and the wider hospital setting.
Currow, DC, Phillips, J & Agar, M 2017, 'Population-based models of planning for palliative care in older people.', Current Opinion in Supportive and Palliative Care, vol. 11, no. 4, pp. 310-314.View/Download from: UTS OPUS or Publisher's site
Health service planning requires demographic, clinical, and health systems data and is unique to each health system. Planning for palliative care in older people must include patients and their carers. This review explores literature from the last 24 months.The proportion of people living in skilled nursing facilities is increasing and many residents require quality palliative care. Simultaneously, the complexity of care for older people is also increasing. Systematic approaches to improving palliative care in these facilities have shown benefits that are cost-effective.Although advance care planning is widely promoted, a randomized controlled trial failed to show the benefits seen in nonrandomized trials. This requires a reconceptualization of current programs that seek to increase uptake.Caregivers take on complex decision-making which can be stressful. By contrast, patients are often very confident that the people who are close to them will make good decisions on their behalf.Specific subgroups considered in this review include carers (and the challenges they face), the 'oldest old' and people with dementia.Excellent research is being done to improve the care of older people with palliative care needs. Ultimately, how can key findings be incorporated into clinical care?
To, THM, LeBlanc, TW, Eastman, P, Neoh, K, Agar, MR, To, LB, Rowett, D, Vandersman, Z & Currow, DC 2017, 'The Prospective Evaluation of the Net Effect of Red Blood Cell Transfusions in Routine Provision of Palliative Care.', Journal of Palliative Medicine, vol. 20, no. 10, pp. 1152-1157.View/Download from: UTS OPUS or Publisher's site
Red Blood Cell (RBC) transfusions are commonly used in palliative care. RBCs are a finite resource, transfusions carry risks, and the net effect (benefits and harms) is poorly defined for people with life-limiting illnesses.To examine the indications and effects of RBC transfusion in palliative care patients.This international, multisite, prospective consecutive cohort study.Palliative care patients undergoing RBC transfusion.Target symptoms (fatigue, breathlessness, generalized weakness, or dizziness) were assessed before transfusion and at day 7 by treating clinicians, using National Cancer Center Institute Common Terminology Criteria for Adverse Events. Assessment of harms was made at day 2.One hundred and one transfusions with day 7 follow-up were collected. Median age was 72.0 (interquartile range 61.5-83.0) years, 58% men, and mean Australia-modified Karnofsky Performance Status (AKPS) of 48 (standard deviation [SD] 17). A mean 2.1 (SD 0.6) unit was tranfused. The target symptoms were fatigue (61%), breathlessness (16%), generalized weakness (12%), dizziness (6%), or other (5%). Forty-nine percent of transfusions improved the primary target symptom, and 78% of transfusions improved at least one of the target symptoms. Harms were infrequent and mild. An AKPS of 40%-50% was associated with higher chances of symptomatic benefit in the target symptom; however, no other predictors of response were identified.In the largest prospective consecutive case series to date, clinicians generally reported benefit, with minimal harms. Ongoing work is required to define the optimal patient- and clinician-reported hematological and functional outcome measures to optimize the use of donor blood and to minimize transfusion-associated risk.
Luckett, T, Phillips, J, Johnson, M, Garcia, M, Bhattarai, P, Carrieri-Kohlman, V, Hutchinson, A, Disler, RT, Currow, D, Agar, M, Ivynian, S, Chye, R, Newton, PJ & Davidson, PM 2017, 'Insights from Australians with respiratory disease living in the community with experience of self-managing through an emergency department 'near miss' for breathlessness: a strengths-based qualitative study.', BMJ Open, vol. 7, no. 12, pp. 1-11.View/Download from: UTS OPUS or Publisher's site
Breathlessness 'crises' in people with chronic respiratory conditions are a common precipitant for emergency department (ED) presentations, many of which might be avoided through improved self-management and support. This study sought insights from people with experience of ED 'near misses' where they considered going to the ED but successfully self-managed instead.A qualitative approach was used with a phenomenological orientation. Participants were eligible if they reported breathlessness on most days from a diagnosed respiratory condition and experience of 1ED near miss. Recruitment was through respiratory support groups and pulmonary rehabilitation clinics. Semistructured interviews were conducted with each participant via telephone or face-to-face. Questions focused on ED-related decision-making, information finding, breathlessness management and support. This analysis used an integrative approach and independent coding by two researchers. Lazarus and Cohen's Transactional Model of Stress and Coping informed interpretive themes.Interviews were conducted with 20 participants, 15 of whom had chronic obstructive pulmonary disease. Nineteen interviews were conducted via telephone. Analysis identified important factors in avoiding ED presentation to include perceived control over breathlessness, self-efficacy in coping with a crisis and desire not to be hospitalised. Effective coping strategies included: taking a project management approach that involved goal setting, monitoring and risk management; managing the affective dimension of breathlessness separately from the sensory perceptual and building three-way partnerships with primary care and respiratory services.In addition to teaching non-pharmacological and pharmacological management of breathlessness, interventions should aim to develop patients' generic self-management skills. Interventions to improve self-efficacy should ensure this is substantiated by transfer of skills and support, including knowledge...
Disalvo, D, Luckett, T, Agar, M, Bennett, A & Davidson, PM 2016, 'Systems to identify potentially inappropriate prescribing in people with advanced dementia: a systematic review', BMC GERIATRICS, vol. 16.View/Download from: UTS OPUS or Publisher's site
Cumming, R, Agar, M, Anstey, K, Beattie, E, Brodaty, H, Broe, T, Clemson, L, Crotty, M, Dietz, M, Draper, B, Flicker, L, Friel, M, Heuzenroeder, L, Koch, S, Kurrle, S, Nay, R, Pond, D, Thompson, J, Santalucia, Y, Whitehead, C, Yates, M, Laver, K, Dyer, S & Comm, GA 2016, 'Clinical Practice Guidelines for Dementia in Australia: A step towards improving uptake of research findings in health- and aged-care settings', AUSTRALASIAN JOURNAL ON AGEING, vol. 35, no. 2, pp. 86-89.View/Download from: Publisher's site
Burmeister, EA, Jordan, SJ, O'Connell, DL, Beesley, VL, Goldstein, D, Gooden, HM, Janda, M, Merrett, ND, Wyld, D, Neale, RE & Pancreatic Cancer Clinical Working Group 2016, 'Using a Delphi process to determine optimal care for patients with pancreatic cancer.', Asia-Pacific journal of clinical oncology, vol. 12, no. 2, pp. 105-114.View/Download from: Publisher's site
Overall 5-year survival for pancreatic cancer is 5%. Optimizing the care that pancreatic cancer patients receive may be one way of improving outcomes. The objective of this study was to establish components of care which Australian health professionals believe important to optimally manage patients with pancreatic cancer.Using a Delphi process, a multidisciplinary panel of 250 health professionals were invited to provide a list of factors they considered important for optimal care of pancreatic cancer patients. They were then asked to score and then rescore (from one [no importance/disagree] to 10 [very important/agree]) the factors. The mean and coefficient of variation scores were calculated and categorized into three levels of importance.Overall, 63 (66% of those sent the final questionnaire; 25% of those initially invited) health professionals from nine disciplines completed the final scoring of 55 statements/factors encompassing themes of presentation/staging, surgery and biliary obstruction, multidisciplinary team details and oncology. Mean scores ranged from 3.7 to 9.7 with the highest related to communication and patient assessment. There was substantial intra- and interdisciplinary variation in views about MDT membership and roles.Overall, the opinions of Australian health professionals reflect international guideline recommended care; however, they identified a number of additional factors focusing on where patients should be treated, the importance of clear communication and the need for multidisciplinary care which were not included in current clinical practice guidelines. Differences in priorities between specialty groups were also identified.
Laver, K, Cumming, RG, Dyer, SM, Agar, MR, Anstey, KJ, Beattie, E, Brodaty, H, Broe, T, Clemson, L, Crotty, M, Dietz, M, Draper, BM, Flicker, L, Friel, M, Heuzenroeder, LMA, Koch, S, Kurrle, S, Nay, R, Pond, CD, Thompson, J, Santalucia, Y, Whitehead, C & Yates, MW 2016, 'Clinical practice guidelines for dementia in Australia', The Medical journal of Australia, vol. 204, no. 5, pp. 191-193.
About 9% of Australians aged 65 years and over have a diagnosis of dementia. Clinical practice guidelines aim to enhance research translation by synthesising recent evidence for health and aged care professionals. New clinical practice guidelines and principles of care for people with dementia detail the optimal diagnosis and management in community, residential and hospital settings. The guidelines have been approved by the National Health and Medical Research Council. The guidelines emphasise timely diagnosis; living well with dementia and delaying functional decline; managing symptoms through training staff in how to provide person-centred care and using non-pharmacological approaches in the first instance; and training and supporting families and carers to provide care.
Hatano, Y, Moroni, M, Wilcock, A, Quinn, S, Csikós, Á, Allan, SG, Agar, M, Clark, K, Clayton, JM & Currow, DC 2016, 'Pharmacovigilance in hospice/palliative care: the net immediate and short-term effects of dexamethasone for anorexia.', BMJ supportive & palliative care, vol. 6, no. 3, pp. 331-337.View/Download from: Publisher's site
Loss of appetite is prevalent in palliative care and distressing for patients and families. Therapies include corticosteroids or progestogens. This study explores the net effect of dexamethasone on anorexia.Prospective data were collected when dexamethasone was started for anorexia as part of routine care. The National Cancer Institute's Common Toxicity Criteria for Adverse Events (NCICTCAE) Likert scales assessed severity of anorexia and immediate and short-term harms at 2 time points: baseline and 7days.This study (41 sites, 8 countries) collected data (July 2013 to July 2014) from 114 patients (mean age 71 (SD 11), 96% with cancer). Median Australian-modified Karnofsky Performance Scale was 50% (range 20-70). Mean baseline NCICTCAE anorexia score was 2.7 (SD 0.6; median 3). 6 patients died by day 7. Of 108 evaluable patients, 74 (68.5%; 95% CI 59.0% to 76.7%) reported 1 reduction anorexia scores by day 7, of whom 30 were 0. Mean dexamethasone dose on day 7 was 4.1mg/day (SD 3.4; median 4; range 0-46mg). 24 patients reported 1 harms (32.4% CI 22.6% to 44.1%; insomnia n=10, depression n=7, euphoria n=7 and hyperglycaemia n=7). Of 24 patients with no benefit, 10 reported 1 harms.This study shows positive and negative effects of 7days of dexamethasone as an appetite stimulant in patients with advanced life-limiting illnesses. Identifying clinicodemographic characteristics of people most at risk of harms with no benefit is a crucial next step. Longer term follow-up will help to understand longer term and cumulative harms.
Agar, MR, Quinn, SJ, Crawford, GB, Ritchie, CS, Phillips, JL, Collier, A & Currow, DC 2016, 'Predictors of Mortality for Delirium in Palliative Care', JOURNAL OF PALLIATIVE MEDICINE, vol. 19, no. 11, pp. 1205-1209.View/Download from: UTS OPUS or Publisher's site
Luckett, TR, Phillips, J, Lintzeris, N, Allsop, D, Lee, J, Solowij, N, Martin, J, Lam, L, Aggarwal, R, McCaffrey, N, Currow, D, Chye, R, Lovell, M, McGregor, I & Agar, M 2016, 'Clinical trials of medicinal cannabis for appetite-related symptoms from advanced cancer: A survey of preferences, attitudes and beliefs among patients willing to consider participation', Internal Medicine Journal, vol. 46, no. 11, pp. 1269-1275.View/Download from: UTS OPUS or Publisher's site
Bush, SH, Lacaze-Masmonteil, N, McNamara-Kilian, MT, MacDonald, AR, Tierney, S, Momoli, F, Agar, M, Currow, DC & Lawlor, PG 2016, 'The preventative role of exogenous melatonin administration to patients with advanced cancer who are at risk of delirium: study protocol for a randomized controlled trial', TRIALS, vol. 17.View/Download from: Publisher's site
Hosie, A, Agar, M & Phillips, J 2016, 'Re-thinking our approach to care of the dying person with delirium: time for a new care paradigm.', International journal of palliative nursing, vol. 22, no. 10, pp. 472-473.View/Download from: UTS OPUS or Publisher's site
Watts, GJ, Clark, K, Agar, M, Davidson, PM, McDonald, C, Lam, LT, Sajkov, D, McCaffrey, N, Doogue, M, Abernethy, AP, Currow, DC & Australian national Palliative Care Clinical Studies Collaborative (PaCCSC) 2016, 'Study protocol: a phase III randomised, double-blind, parallel arm, stratified, block randomised, placebo-controlled trial investigating the clinical effect and cost-effectiveness of sertraline for the palliative relief of breathlessness in people with chronic breathlessness.', BMJ open, vol. 6, no. 11, p. e013177.View/Download from: UTS OPUS or Publisher's site
INTRODUCTION:Breathlessness remains a highly prevalent and distressing symptom for many patients with progressive life-limiting illnesses. Evidence-based interventions for chronic breathlessness are limited, and there is an ongoing need for high-quality research into developing management strategies for optimal palliation of this complex symptom. Previous studies have suggested that selective serotonin reuptake inhibitors such as sertraline may have a role in reducing breathlessness. This paper presents the protocol for a large, adequately powered randomised study evaluating the use of sertraline for chronic breathlessness in people with progressive life-limiting illnesses. METHODS AND ANALYSIS:A total of 240 participants with modified Medical Research Council Dyspnoea Scale breathlessness of level 2 or higher will be randomised to receive either sertraline or placebo for 28days in this multisite, double-blind study. The dose will be titrated up every 3days to a maximum of 100mg daily. The primary outcome will be to compare the efficacy of sertraline with placebo in relieving the intensity of worst breathlessness as assessed by a 0-100mm Visual Analogue Scale. A number of other outcome measures and descriptors of breathlessness as well as caregiver assessments will also be recorded to ensure adequate analysis of participant breathlessness and to allow an economic analysis to be performed. Participants will also be given the option of continuing blinded treatment until either study data collection is complete or net benefit ceases. Appropriate statistical analysis of primary and secondary outcomes will be used to describe the wealth of data obtained. ETHICS AND DISSEMINATION:Ethics approval was obtained at all participating sites. Results of the study will be submitted for publication in peer-reviewed journals and the key findings presented at national and international conferences. TRIAL REGISTRATION NUMBER:ACTRN12610000464066.
McCaffrey, N, Hardy, J, Fazekas, B, Agar, M, Devilee, L, Rowett, D & Currow, D 2016, 'Potential economic impact on hospitalisations of the Palliative Care Clinical Studies Collaborative (PaCCSC) ketamine randomised controlled trial', AUSTRALIAN HEALTH REVIEW, vol. 40, no. 1, pp. 100-105.View/Download from: Publisher's site
Agar, M, Koh, E-S, Gibbs, E, Barnes, EH, Hovey, E, Livingstone, A, Sawkins, K, Chye, R, Lovell, MR, Clark, K, Vardy, J, King, M & Neuro-Oncol, CTG 2016, 'Validating self-report and proxy reports of the Dexamethasone Symptom Questionnaire -Chronic for the evaluation of longer-term corticosteroid toxicity', SUPPORTIVE CARE IN CANCER, vol. 24, no. 3, pp. 1209-1218.View/Download from: Publisher's site
Dong, ST, Costa, DSJ, Butow, PN, Lovell, MR, Agar, M, Velikova, G, Teckle, P, Tong, A, Tebbutt, NC, Clarke, SJ, van der Hoek, K, King, MT & Fayers, PM 2016, 'Symptom Clusters in Advanced Cancer Patients: An Empirical Comparison of Statistical Methods and the Impact on Quality of Life', JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, vol. 51, no. 1, pp. 88-98.View/Download from: Publisher's site
Dong, ST, Butow, PN, Tong, A, Agar, M, Boyle, F, Forster, BC, Stockler, M & Lovell, MR 2016, 'Patients' experiences and perspectives of multiple concurrent symptoms in advanced cancer: a semi-structured interview study', SUPPORTIVE CARE IN CANCER, vol. 24, no. 3, pp. 1373-1386.View/Download from: UTS OPUS or Publisher's site
Dong, ST, Butow, PN, Agar, M, Lovell, MR, Boyle, F, Stockler, M, Forster, BC & Tong, A 2016, 'Clinicians' Perspectives on Managing Symptom Clusters in Advanced Cancer: A Semi-Structured Interview Study.', Journal of Pain and Symptom Management, vol. 51, no. 4, pp. 706-717.View/Download from: Publisher's site
Managing "symptom clusters," or multiple concurrent symptoms in patients with advanced cancer remains a clinical challenge. The optimal processes constituting effective management of symptoms clusters remain uncertain.To describe the attitudes and strategies of clinicians in managing multiple co-occurring symptoms in patients with advanced cancer.Semi-structured interviews were conducted with 48 clinicians (palliative care physicians [n=10], oncologists [n=6], general practitioners [n=6], nurses [n=12], and allied health providers [n=14]), purposively recruited from two acute hospitals, two palliative care centers, and four community general practices in Sydney, Australia. Transcripts were analyzed using thematic analysis and adapted grounded theory.Six themes were identified: uncertainty in decision making (inadequacy of scientific evidence, relying on experiential knowledge, pressure to optimize care); attunement to patient and family (sensitivity to multiple cues, prioritizing individual preferences, addressing psychosocial and physical interactions, opening "Pandora's Box"); deciphering cause to guide intervention (disaggregating symptoms and interactions, flexibility in assessment, curtailing investigative intrusiveness); balancing complexities in medical management (trading off side effects, minimizing mismatched goals, urgency in resolving severe symptoms); fostering hope and empowerment (allaying fear of the unknown, encouraging meaning making, championing patient empowerment, truth telling); and depending on multidisciplinary expertise (maximizing knowledge exchange, sharing management responsibility, contending with hierarchical tensions, isolation and discontinuity of care).Management of symptom clusters, as both an art and a science, is currently fraught with uncertainty in decision making. Strengthening multidisciplinary collaboration; continuity of care; more pragmatic planning of clinical trials to address more than one symptom; and training in sym...
Phillips, JL & Agar, MR 2016, 'Exemplary nursing leadership is central to improving care of the dying', Journal of Nursing Management, vol. 24, no. 1, pp. 1-3.View/Download from: UTS OPUS or Publisher's site
Hosie, A, Lobb, E, Agar, M, Davidson, P, Chye, R, Lam, L & Phillips, J 2016, 'Measuring delirium point-prevalence in two Australian palliative care inpatient units.', International journal of palliative nursing, vol. 22, no. 1, pp. 13-21.View/Download from: UTS OPUS or Publisher's site
Internationally, delirium prevalence in palliative care is reported to range between 26-88%, yet little is known about the occurrence of delirium in Australian palliative care inpatient populations.To: 1) ascertain 24-hour delirium point-prevalence in an Australian palliative care inpatient population; 2) test the feasibility and acceptability of the delirium measurement methodology.This was a prospective cross-sectional study. Delirium was measured in patients of two palliative care units using the Nursing Delirium Screening Scale, Memorial Delirium Assessment Scale and DSM-5 diagnostic criteria. Descriptive statistics were used to report patient demographics, palliative care phase, function, delirium measure completion, and proportion of patients with a positive screen and diagnosis.Patients (n=47) had a mean age of 74 years (SD+10) and mostly malignant diagnoses (96%). All patients were screened for delirium, but few were capable of completing the Memorial Delirium Assessment Scale (n=2). One-third of patients (34%) screened positive for delirium and 19% were diagnosed as delirious according to the DSM-5.The Nursing Delirium Screening Scale and physician application of DSM-5 proved feasible and acceptable, while the Memorial Delirium Assessment Scale did not. Patients' advanced age and proportions screening positive for delirium and diagnosed as delirious attest to the need to rapidly recognise, assess and respond to patients experiencing this distressing disorder while being cared for in palliative care inpatient settings.
Sanderson, C, Quinn, SJ, Agar, M, Chye, R, Clark, K, Doogue, M, Fazekas, B, Lee, J, Lovell, MR, Rowett, D, Spruyt, O & Currow, DC 2016, 'Pharmacovigilance in hospice/palliative care: net effect of pregabalin for neuropathic pain.', BMJ Supportive and Palliative Care, vol. 6, pp. 323-330.View/Download from: UTS OPUS or Publisher's site
Real-world effectiveness of many medications has been poorly researched, including in hospice/palliative care. Directly extrapolating findings from other clinical settings may not yield robust clinical advice. Pharmacovigilance studies provide an opportunity to understand better the net impact of medications. The study aimed to examine immediate and short-term benefits and harms of pregabalin in routine practice for neuropathic pain in hospice/palliative care.A consecutive cohort of 155 patients from 62 centres in 5 countries was started on pregabalin and studied prospectively. Data were collected at three time points: baseline; day 7 (immediate, short-term harms); ad hoc reports of any harms 21days; and day 21 (short-term benefits).Median dose for 155 patients at day 21 was 150mg/24h. Benefits were reported by 61 patients (39%), of whom 11 (7%) experienced complete pain resolution. Harms were reported by 51 (35%) patients at or before 7days, the most frequent of which were somnolence, fatigue, cognitive disturbance and dizziness. 10 patients (6%) ceased pregabalin due to harms, but 82 patients (53%) were being treated at 21days. In regression modelling, people with worse baseline pain derived more benefit (OR=8.5 (95% CI 2.5 to 28.68).Pregabalin delivered benefit to many patients, with 4 of 10 experiencing pain reductions by 21days. Harms, occurring in 1 in 3 patients, may be difficult to detect in clinical practice, as they mostly involve worsening of symptoms prevalent at baseline.
Mowll, J, Lobb, EA, Lane, L, Lacey, J, Chochinov, HM, Kelly, B, Agar, M, Links, M & Kearsley, JH 2015, 'A preliminary study to develop an intervention to facilitate communication between couples in advanced cancer', PALLIATIVE & SUPPORTIVE CARE, vol. 13, no. 5, pp. 1381-1390.View/Download from: Publisher's site
Marston, C, Agar, M & Brown, T 2015, 'Patients' and caregivers' perceptions of occupational therapy and adapting to discharge home from an inpatient palliative care setting', BRITISH JOURNAL OF OCCUPATIONAL THERAPY, vol. 78, no. 11, pp. 688-696.View/Download from: Publisher's site
Sanderson, C, Quinn, SJ, Agar, M, Chye, R, Clark, K, Doogue, M, Fazekas, B, Lee, J, Lovell, MR, Rowett, D, Spruyt, O & Currow, DC 2015, 'Pharmacovigilance in hospice/palliative care: net effect of gabapentin for neuropathic pain.', BMJ supportive & palliative care, vol. 5, no. 3, pp. 273-280.View/Download from: UTS OPUS or Publisher's site
Hospice/palliative care patients may differ from better studied populations, and data from other populations cannot necessarily be extrapolated into hospice/palliative care clinical practice. Pharmacovigilance studies provide opportunities to understand the harms and benefits of medications in routine practice. Gabapentin, a -amino butyric acid analogue antiepileptic drug, is commonly prescribed for neuropathic pain in hospice/palliative care. Most of the evidence however relates to non-malignant, chronic pain syndromes (diabetic neuropathy, postherpetic neuralgia, central pain syndromes, fibromyalgia). The aim of this study was to quantify the immediate and short-term clinical benefits and harms of gabapentin in routine hospice/palliative care practice.Multisite, prospective, consecutive cohort.127 patients, 114 of whom had cancer, who started gabapentin for neuropathic pain as part of routine clinical care.42 centres from seven countries. Data were collected at three time points-at baseline, at day 7 (and at any time; immediate and short-term harms) and at day 21 (clinical benefits).At day 21, the average dose of gabapentin for those still using it (n=68) was 653mg/24h (range 0-1800mg) and 54 (42%) reported benefits, of whom 7 (6%) experienced complete pain resolution. Harms were reported in 39/127 (30%) patients at day 7, the most frequent of which were cognitive disturbance, somnolence, nausea and dizziness. Ten patients had their medication ceased due to harms. The presence of significant comorbidities, higher dose and increasing age increased the likelihood of harm.Overall, 42% of people experienced benefit at a level that resulted in continued use at 21days.
Phillips, JL, Lovell, M, Luckett, T, Agar, M, Green, AR & Davidson, PM 2015, 'Australian survey of current practice and guideline use in adult cancer pain assessment and management: The community nurse perspective', Collegian, vol. 22, no. 1, pp. 33-41.View/Download from: UTS OPUS or Publisher's site
Cancer pain remains a major public health concern. Despite effective treatmentsbeing available to manage the majority of cancer pain, this debilitating symptom is frequentlyunder treated. As cancer has becomes a chronic disease a range of health professionals, includ-ing community nurses in Australia are increasingly caring for people living with cancer relatedpain. Yet, little is known about community nurses capacity to assess and manage cancer painin accordance with best available evidence.
Currow, DC, Quinn, S, Agar, M, Fazekas, B, Hardy, J, McCaffrey, N, Eckermann, S, Abernethy, AP & Clark, K 2015, 'Double-Blind, Placebo-Controlled, Randomized Trial of Octreotide in Malignant Bowel Obstruction', JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, vol. 49, no. 5, pp. 814-821.View/Download from: Publisher's site
McCaffrey, N, Agar, M, Harlum, J, Karnon, J, Currow, D & Eckermann, S 2015, 'Better Informing Decision Making with Multiple Outcomes Cost-Effectiveness Analysis under Uncertainty in Cost-Disutility Space', PLOS ONE, vol. 10, no. 3.View/Download from: Publisher's site
Lovell, MR, Phillips, J, Luckett, T & Agar, M 2015, 'Improving the system for managing cancer pain', INTERNAL MEDICINE JOURNAL, vol. 45, no. 3, pp. 361-362.View/Download from: UTS OPUS or Publisher's site
Currow, DC, Clark, K, Kamal, A, Collier, A, Agar, MR, Lovell, MR, Phillips, JL & Ritchie, C 2015, 'The Population Burden of Chronic Symptoms that Substantially Predate the Diagnosis of a Life-Limiting Illness', JOURNAL OF PALLIATIVE MEDICINE, vol. 18, no. 6, pp. 480-485.View/Download from: UTS OPUS or Publisher's site
Lovell, M, Luckett, T, Boyle, F, Stubbs, J, Phillips, J, Davidson, PM, Olver, I, von Dincklage, J & Agar, M 2015, 'Adaptation of international guidelines on assessment and management of cancer pain for the Australian context', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY, vol. 11, no. 2, pp. 170-177.View/Download from: UTS OPUS or Publisher's site
Nikles, J, Mitchell, GK, Hardy, J, Agar, M, Senior, H, Carmont, S-A, Schluter, PJ, Good, P, Vora, R & Currow, D 2015, 'Testing pilocarpine drops for dry mouth in advanced cancer using n-of-1 trials: A feasibility study', PALLIATIVE MEDICINE, vol. 29, no. 10, pp. 967-974.View/Download from: Publisher's site
Luckett, T, Bhattarai, P, Phillips, J, Agar, M, Currow, D, Krastev, Y & Davidson, PM 2015, 'Advance care planning in 21st century Australia: a systematic review and appraisal of online advance care directive templates against national framework criteria', AUSTRALIAN HEALTH REVIEW, vol. 39, no. 5, pp. 552-560.View/Download from: UTS OPUS or Publisher's site
Agar, M, Lawlor, P, Quinn, S, Caplan, G, Draper, B, Rowett, D, Devilee, L, Fazekas, B, Sanderson, C, McCaffery, N, Hardy, J, Le, B, Eckermann, S, Hill, M & Currow, D 2015, 'Phase III randomised double-blind controlled trial of oral risperidone, haloperidol or placebo with rescue subcutaneous midazolam for delirium management in palliative care', AUSTRALASIAN JOURNAL ON AGEING, vol. 34, no. S1, pp. 33-33.
Guidelines recommend targeted use of antipsychotics indelirium for specic symptoms however this approach has notbeen evaluated in randomised trials. To compare the efcacyof risperidone relative to placebo in the control of specicdelirium symptoms in palliative care patients (communica-tion, behaviour and/or perceptual disturbances on NursingDelirium Screening Scale) at 72 hours after study commence-ment. Secondary aims were to compare haloperidol andplacebo; and risperidone and haloperidol
Hosie, A, Lobb, E, Agar, M, Davidson, PM, Chye, R & Phillips, J 2015, 'Nurse perceptions of the Nursing Delirium Screening Scale in two palliative care inpatient units: a focus group study', JOURNAL OF CLINICAL NURSING, vol. 24, no. 21-22, pp. 3276-3285.View/Download from: UTS OPUS or Publisher's site
Agar, M, Beattie, E, Luckett, T, Phillips, J, Luscombe, G, Goodall, S, Mitchell, G, Pond, D, Davidson, PM & Chenoweth, L 2015, 'Pragmatic cluster randomised controlled trial of facilitated family case conferencing compared with usual care for improving end of life care and outcomes in nursing home residents with advanced dementia and their families: the IDEAL study protocol', BMC Palliative Care, vol. 14, no. 63.View/Download from: UTS OPUS or Publisher's site
Halkett, GKB, Lobb, EA, Miller, L, Phillips, JL, Shaw, T, Moorin, R, Long, A, King, A, Clarke, J, Fewster, S, Hudson, P, Agar, M & Nowak, AK 2015, 'Protocol for the Care-IS Trial: a randomised controlled trial of a supportive educational intervention for carers of patients with high-grade glioma (HGG)', BMJ OPEN, vol. 5, no. 10.View/Download from: UTS OPUS or Publisher's site
There is consensus that survivorship care should be integrated, risk or needs stratified, individualised, coordinated and multidisciplinary. But further research is needed to determine the service models that can best deliver optimal outcomes in the most cost-effective way. Model heterogeneity and diversity is needed to address issues that are disease, treatment or symptom specific, and account for other modifying influences such as comorbid illness and lifestyle. Further work is needed to determine the key elements within models of care configured to support cancer survivors that positively influence outcomes, and how these elements can be best delivered across a diverse range of care settings. In the meantime, adopting a needs based approach to care at the individual patient level will ensure that those in most need have access to relevant support and care from specialist palliative care services. Fortunately, current Australian health reforms provide a climate of plasticity and innovation that is conducive to the paradigm shifts required.
Virdun, C, Brown, N, Phillips, JL, Luckett, T, Agar, M, Green, AR & Davidson, PM 2015, 'Elements of optimal paediatric palliative care for children and young people: An integrative review using a systematic approach', Collegian, vol. 22, no. 4, pp. 421-431.View/Download from: UTS OPUS or Publisher's site
Background: Models of palliative care need to address the unmet needs of children, youngpeople and families.Objective: To undertake an integrative review to identify the key elements of optimal paediatric palliative care from the perspectives of children and young people with palliative care needs and their parents.
Smith, T, Agar, M, Davidson, P, Jenkins, C & Ingham, J 2014, 'Noninvasive Ventilation: Better Than You Think; Insights From Behind the Mask.', Chest, vol. 146, no. 4, Supplement 2, pp. 26A-26A.View/Download from: Publisher's site
SESSION TITLE: COPD Diagnosis and Evaluation Posters ISESSION TYPE: Original Investigation PosterPRESENTED ON: Wednesday, October 29, 2014 at 01:30 PM - 02:30 PMPURPOSE: Non-invasive ventilation (NIV) is increasingly used in the management of acute respiratory failure due to decompensated chronic cardiorespiratory disease. The increasing burden of chronic disease and focus on person-centred care, necessitates frank discussions of the benefits and burdens of treatment and an understanding of the patients' perspective. We aimed to describe the subjective experience of individuals undergoing NIV for acute hypercapnic respiratory failure.METHODS: Face-to-face interviews, analysed using qualitative thematic analysisRESULTS: Thirteen participants were interviewed. Six interrelated themes emerged: A passenger on a journey dominated by chronic illness; Balancing benefits and burdens of NIV; Looking to another chance; Knowing what alleviates my distress; Struggling and suffering; Feeling vulnerable and trusting staff. Participants viewed NIV as a two-edged sword; providing substantial relief from symptoms, but engendering discomfort and burden. No participant would forgo this treatment in the future. While participants sometimes appeared passive, they often had significant insight into what relieved their subjective distress. Participants expressed both a sense of compulsion to accept NIV and gratitude for NIV as it facilitated another chance at life. Many participants described minimal recollection of their acute hospitalisation, and placed a great amount of trust in health care providers.CONCLUSIONS: Participants described balancing benefits and burdens of NIV, with the goal of achieving 'another chance' at life. This goal was highly valued despite their description of their life as one of struggle and suffering. While many knew what might alleviate their distress they often appeared passive, like passengers on a journey dominated by their chronic illness.CLINICAL IMPLI...
Leonard, MM, Agar, M, Spiller, JA, Davis, B, Mohamad, MM, Meagher, DJ & Lawlor, PG 2014, 'Delirium diagnostic and classification challenges in palliative care: subsyndromal delirium, comorbid delirium-dementia, and psychomotor subtypes.', Journal of Pain and Symptom Management, vol. 48, no. 2, pp. 199-214.View/Download from: UTS OPUS or Publisher's site
CONTEXT: Delirium often presents difficult diagnostic and classification challenges in palliative care settings. OBJECTIVES: To review three major areas that create diagnostic and classification challenges in relation to delirium in palliative care: subsyndromal delirium (SSD), delirium in the context of comorbid dementia, and classification of psychomotor subtypes, and to identify knowledge gaps and research priorities in relation to these three areas of focus. METHODS: We combined multidisciplinary input from delirium researchers and knowledge users at an international delirium study planning meeting and relevant PubMed literature searches as the knowledge synthesis strategy in this review. RESULTS: We identified six (SSD), 33 (dementia), and 44 (psychomotor subtypes) articles of relevance in relation to the focus of our review. Recent literature data highlight the frequency and impact of SSD, the relevance of comorbid dementia, and the propensity for a hypoactive presentation of delirium in the palliative population. The differential diagnoses to consider are wide and include pain, fatigue, mood disturbance, psychoactive medication effects, and other causes for altered consciousness. CONCLUSION: Challenges in the diagnosis and classification of delirium in people with advanced disease are compounded by the generalized disturbance of central nervous system function that occurs in the seriously ill, often with comorbid illness, including dementia. Further research is needed to delineate the pathophysiological and clinical associations of these presentations and thus inform therapeutic strategies. The expanding aged population and growing focus on dementia care in palliative care highlight the need to conduct this research.
The WHO analgesic ladder for the treatment of cancer pain provides a three-step sequential approach for analgesic administration based on pain severity that has global applicability. Nonopioids were recommended for mild pain, with the addition of mild opioids for moderate pain and strong opioids for severe pain. Here, we review the evidence for the use of nonopioid analgesic agents in patients with cancer and describe the mode of action of the main drug classes. Evidence supports the use of anti-inflammatory drugs such as acetaminophen/paracetamol and nonsteroidal anti-inflammatory drugs (NSAIDs) for mild cancer pain. Adding an NSAID to an opioid for stronger cancer pain is efficacious, but the risk of long-term adverse effects has not been quantified. There is limited evidence to support using acetaminophen with stronger opioids. Corticosteroids have a specific role in spinal cord compression and brain metastases, where improved analgesia is a secondary benefit. There is limited evidence for adding corticosteroids to stronger opioids when pain control is the primary objective. Systematic reviews suggest a role for antidepressant and anticonvulsant medications for neuropathic pain, but there are methodologic issues with the available studies. Bisphosphonates improve pain in patients with bony metastases in some tumor types. Denosumab may delay worsening of pain compared with bisphosphonates. Larger studies of longer duration are required to address outstanding questions concerning the use of nonopioid analgesia for stronger cancer pain.
Leonard, MM, Nekolaichuk, C, Meagher, DJ, Barnes, C, Gaudreau, J-D, Watanabe, S, Agar, M, Bush, SH & Lawlor, PG 2014, 'Practical assessment of delirium in palliative care.', Journal of Pain and Symptom Management, vol. 48, no. 2, pp. 176-190.View/Download from: UTS OPUS or Publisher's site
CONTEXT: Delirium is a common, distressing neuropsychiatric complication for patients in palliative care settings, where the need to minimize burden yet accurately assess delirium is hugely challenging. OBJECTIVES: This review focused on the optimal clinical and research application of delirium assessment tools and methods in palliative care settings. METHODS: In addition to multidisciplinary input from delirium researchers and other relevant stakeholders at an international meeting, we searched PubMed (1990-2012) and relevant reference lists to identify delirium assessment tools used either exclusively or partly in the context of palliative care. RESULTS: Of the 26 delirium scales identified, we selected six for in-depth review: three screening tools, two severity measures, and one research tool for neuropsychological assessment of delirium. These tools differed regarding intended use, ease of use, training requirements, psychometric properties, and validation in or suitability for palliative care populations. The Nursing Delirium Screening Scale, Single Question in Delirium, or Confusion Assessment Method, ideally with a brief attention test, can effectively screen for delirium. Favoring inclusivity, use of Diagnostic and Statistical Manual of Mental Disorders-IV criteria gives the best results for delirium diagnosis. The Revised Delirium Rating Scale and the Memorial Delirium Assessment Scale are the best available options for monitoring severity, and the Cognitive Test for Delirium provides detailed neuropsychological assessment for research purposes. CONCLUSION: Given the unique characteristics of patients in palliative care settings, further contextually sensitive studies of delirium assessment are required in this population.
Boustani, M, Rudolph, J, Shaughnessy, M, Gruber-Baldini, A, Alici, Y, Arora, RC, Campbell, N, Flaherty, J, Gordon, S, Kamholz, B, Maldonado, JR, Pandharipande, P, Parks, J, Waszynski, C, Khan, B, Neufeld, K, Olofsson, B, Thomas, C, Young, J, Davis, D, Laurila, J, Page, V, Teodorczuk, A, Agar, M, Meagher, D, Spiller, J, Schieveld, J, Milisen, K, de Rooij, S, van Munster, B, Kreisel, S, Cerejeira, J, Hasemann, W, Wilson, D, Cunningham, C, Morandi, A, Slooter, A, Detroyer, E, Caraceni, A & MacLullich, A 2014, 'The DSM-5 criteria, level of arousal and delirium diagnosis: Inclusiveness is safer', BMC Medicine, vol. 12, no. 1, pp. 1-4.View/Download from: UTS OPUS or Publisher's site
© 2014 European Delirium Association et al.; licensee BioMed Central Ltd. Background: Delirium is a common and serious problem among acutely unwell persons. Alhough linked to higher rates of mortality, institutionalisation and dementia, it remains underdiagnosed. Careful consideration of its phenomenology is warranted to improve detection and therefore mitigate some of its clinical impact. The publication of the fifth edition of the Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-5) provides an opportunity to examine the constructs underlying delirium as a clinical entity.Discussion: Altered consciousness has been regarded as a core feature of delirium; the fact that consciousness itself should be physiologically disrupted due to acute illness attests to its clinical urgency. DSM-5 now operationalises 'consciousness' as 'changes in attention'. It should be recognised that attention relates to content of consciousness, but arousal corresponds to level of consciousness. Reduced arousal is also associated with adverse outcomes. Attention and arousal are hierarchically related; level of arousal must be sufficient before attention can be reasonably tested.Summary: Our conceptualisation of delirium must extend beyond what can be assessed through cognitive testing (attention) and accept that altered arousal is fundamental. Understanding the DSM-5 criteria explicitly in this way offers the most inclusive and clinically safe interpretation.
Lovell, MR, Luckett, T, Boyle, FM, Phillips, J, Agar, M & Davidson, PM 2014, 'Patient Education, Coaching, and Self-Management for Cancer Pain', JOURNAL OF CLINICAL ONCOLOGY, vol. 32, no. 16, pp. 1712-+.View/Download from: UTS OPUS or Publisher's site
Hosie, A, Lobb, E, Agar, M, Davidson, PM & Phillips, J 2014, 'Identifying the barriers and enablers to palliative care nurses' recognition and assessment of delirium symptoms: a qualitative study.', Journal of pain and symptom management, vol. 48, no. 5, pp. 815-830.View/Download from: UTS OPUS or Publisher's site
CONTEXT: Delirium is underrecognized by nurses, including those working in palliative care settings where the syndrome occurs frequently. Identifying contextual factors that support and/or hinder palliative care nurses' delirium recognition and assessment capabilities is crucial, to inform development of clinical practice and systems aimed at improving patients' delirium outcomes. OBJECTIVES: The aim of the study was to identify nurses' perceptions of the barriers and enablers to recognizing and assessing delirium symptoms in palliative care inpatient settings. METHODS: A series of semistructured interviews, guided by critical incident technique, were conducted with nurses working in Australian palliative care inpatient settings. A hypoactive delirium vignette prompted participants' recall of delirium and identification of the perceived factors (barriers and enablers) that impacted on their delirium recognition and assessment capabilities. Thematic content analysis was used to analyze the qualitative data. RESULTS: Thirty participants from nine palliative care services provided insights into the barriers and enablers of delirium recognition and assessment in the inpatient setting that were categorized as patient and family, health professional, and system level factors. Analysis revealed five themes, each reflecting both identified barriers and current and/or potential enablers: 1) value in listening to patients and engaging families, 2) assessment is integrated with care delivery, 3) respecting and integrating nurses' observations, 4) addressing nurses' delirium knowledge needs, and 5) integrating delirium recognition and assessment processes. CONCLUSION: Supporting the development of palliative care nursing delirium recognition and assessment practice requires attending to a range of barriers and enablers at the patient and family, health professional, and system levels.
Luckett, T, Davidson, PM, Boyle, F, Liauw, W, Agar, M, Green, A, Lovell, M, Care, IIP & Cooperative, PP 2014, 'Australian survey of current practice and guideline use in adult cancer pain assessment and management: Perspectives of oncologists', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY, vol. 10, no. 2, pp. E99-E107.View/Download from: UTS OPUS or Publisher's site
To, THM, Agar, M, Yates, P & Currow, DC 2014, 'Prescribing for nausea in palliative care: a cross-sectional national survey of Australian palliative medicine doctors.', Journal of Palliative Medicine, vol. 17, no. 9, pp. 1032-1036.View/Download from: UTS OPUS or Publisher's site
BACKGROUND: Nausea can be a debilitating symptom for patients with a life-limiting illness. While addressing reversible components, nonpharmacological strategies and antiemetics are the main therapeutic option. The choice of medication, dose, and route of administration remain highly variable. OBJECTIVE: The aim of this study was to codify the current clinical approaches and quantify any variation found nationally. METHODS: A cross-sectional study utilizing a survey of palliative medicine clinicians examined prescribing preferences for nausea using a clinical vignette. Respondent characteristics, the use of nonpharmacological interventions, first- and second-line antiemetic choices, commencing and maximal dose, and time to review were collected. RESULTS: Responding clinicians were predominantly working in palliative medicine across a range of settings with a 49% response rate (105/213). The main nonpharmacological recommendation was "small, frequent snacks." Metoclopramide was the predominant first-line agent (69%), followed by haloperidol (26%), while second-line haloperidol was the predominant agent (47%), with wide variation in other nominated agents. Respondents favoring metoclopramide as first-line tended to use haloperidol second-line (65%), but not vice versa. Maximal doses for an individual antiemetic varied up to tenfold. CONCLUSION: For nausea, a commonly encountered symptom in palliative care, clinicians' favored metoclopramide and haloperidol; however, after these choices, there was large variation in antiemetic selection. While most clinicians recommended modifying meal size and frequency, use of other nonpharmacological therapies was limited.
Bush, SH, Leonard, MM, Agar, M, Spiller, JA, Hosie, A, Wright, DK, Meagher, DJ, Currow, DC, Bruera, E & Lawlor, PG 2014, 'End-of-life delirium: issues regarding recognition, optimal management, and the role of sedation in the dying phase.', Journal of Pain and Symptom Management, vol. 48, no. 2, pp. 215-230.View/Download from: UTS OPUS or Publisher's site
CONTEXT: In end-of-life care, delirium is often not recognized and poses unique management challenges, especially in the case of refractory delirium in the terminal phase. OBJECTIVES: To review delirium in the terminal phase context, specifically in relation to recognition issues; the decision-making processes and management strategies regarding its reversibility; the potential refractoriness of delirium to symptomatic treatment; and the role of sedation in refractory delirium. METHODS: We combined multidisciplinary input from delirium researchers and knowledge users at an international delirium study planning meeting and relevant electronic database literature searches (Ovid Medline, Embase, PsycINFO, and CINAHL) to inform this narrative review. RESULTS: The overall management strategy for delirium at the end of life is directed by the patient's prognosis in association with the patient's goals of care. As symptoms of delirium are often refractory in the terminal phase, especially in the case of agitated delirium, the judicious use of palliative sedation is frequently required. However, there remains a lack of high-level evidence for the management of delirium in the terminal phase, including the role of antipsychotics and optimal sedation strategies. For the family and health-care staff, clear communication, education, and emotional support are vital components to assist with decision making and direct the treatment care plan. CONCLUSION: Further research on the effectiveness of delirium management strategies in the terminal phase for patients and their families is required. Further validation of assessment tools for diagnostic screening and severity measurement is needed in this patient population.
Bush, SH, Bruera, E, Lawlor, PG, Kanji, S, Davis, DHJ, Agar, M, Wright, DK, Hartwick, M, Currow, DC, Gagnon, B, Simon, J & Pereira, JL 2014, 'Clinical practice guidelines for delirium management: potential application in palliative care.', Journal of Pain and Symptom Management, vol. 48, no. 2, pp. 249-258.View/Download from: UTS OPUS or Publisher's site
CONTEXT: Delirium occurs in patients across a wide array of health care settings. The extent to which formal management guidelines exist or are adaptable to palliative care is unclear. OBJECTIVES: This review aims to 1) source published delirium management guidelines with potential relevance to palliative care settings, 2) discuss the process of guideline development, 3) appraise their clinical utility, and 4) outline the processes of their implementation and evaluation and make recommendations for future guideline development. METHODS: We searched PubMed (1990-2013), Scopus, U.S. National Guideline Clearinghouse, Google, and relevant reference lists to identify published guidelines for the management of delirium. This was supplemented with multidisciplinary input from delirium researchers and other relevant stakeholders at an international delirium study planning meeting. RESULTS: There is a paucity of high-level evidence for pharmacological and non-pharmacological interventions in the management of delirium in palliative care. However, multiple delirium guidelines for clinical practice have been developed, with recommendations derived from "expert opinion" for areas where research evidence is lacking. In addition to their potential benefits, limitations of clinical guidelines warrant consideration. Guidelines should be appraised and then adapted for use in a particular setting before implementation. Further research is needed on the evaluation of guidelines, as disseminated and implemented in a clinical setting, focusing on measurable outcomes in addition to their impact on quality of care. CONCLUSION: Delirium clinical guidelines are available but the level of evidence is limited. More robust evidence is required for future guideline development.
Lawlor, PG, Davis, DHJ, Ansari, M, Hosie, A, Kanji, S, Momoli, F, Bush, SH, Watanabe, S, Currow, DC, Gagnon, B, Agar, M, Bruera, E, Meagher, DJ, de Rooij, SEJA, Adamis, D, Caraceni, A, Marchington, K & Stewart, DJ 2014, 'An analytical framework for delirium research in palliative care settings: integrated epidemiologic, clinician-researcher, and knowledge user perspectives.', Journal of Pain and Symptom Management, vol. 48, no. 2, pp. 159-175.View/Download from: UTS OPUS or Publisher's site
CONTEXT: Delirium often presents difficult management challenges in the context of goals of care in palliative care settings. OBJECTIVES: The aim was to formulate an analytical framework for further research on delirium in palliative care settings, prioritize the associated research questions, discuss the inherent methodological challenges associated with relevant studies, and outline the next steps in a program of delirium research. METHODS: We combined multidisciplinary input from delirium researchers and knowledge users at an international delirium study planning meeting, relevant literature searches, focused input of epidemiologic expertise, and a meeting participant and coauthor survey to formulate a conceptual research framework and prioritize research questions. RESULTS: Our proposed framework incorporates three main groups of research questions: the first was predominantly epidemiologic, such as delirium occurrence rates, risk factor evaluation, screening, and diagnosis; the second covers pragmatic management questions; and the third relates to the development of predictive models for delirium outcomes. Based on aggregated survey responses to each research question or domain, the combined modal ratings of "very" or "extremely" important confirmed their priority. CONCLUSION: Using an analytical framework to represent the full clinical care pathway of delirium in palliative care settings, we identified multiple knowledge gaps in relation to the occurrence rates, assessment, management, and outcome prediction of delirium in this population. The knowledge synthesis generated from adequately powered, multicenter studies to answer the framework's research questions will inform decision making and policy development regarding delirium detection and management and thus help to achieve better outcomes for patients in palliative care settings.
Dong, ST, Butow, PN, Costa, DSJ, Lovell, MR & Agar, M 2014, 'Symptom clusters in patients with advanced cancer: a systematic review of observational studies.', Journal of Pain and Symptom Management, vol. 48, no. 3, pp. 411-450.View/Download from: UTS OPUS or Publisher's site
CONTEXT: Advanced cancer patients typically experience multiple symptoms, which may influence patient outcomes synergistically. The composition of these symptom clusters (SCs) differs depending on various clinical variables and the timing and method of their assessment. OBJECTIVES: The objective of this systematic review was to examine the composition, longitudinal stability, and consistency across methodologies of common SCs, as well as their common predictors and outcomes. METHODS: A search of MEDLINE, CINAHL, Embase, Web of Science, and PsycINFO was conducted using variants of symptom clusters, cancer, and palliative care. RESULTS: Thirty-three articles were identified and reviewed. Many SCs were identified, with four common groupings being anxiety-depression, nausea-vomiting, nausea-appetite loss, and fatigue-dyspnea-drowsiness-pain. SCs in most cases were not stable longitudinally. The various statistical methods used (most commonly principal component analysis, exploratory factor analysis, and hierarchical cluster analysis) tended to reveal different SCs. Different measurement tools were used in different studies, each containing a different array of symptoms. The predictors and outcomes of SCs were also inconsistent across studies. No studies of patient experiences of SCs were identified. CONCLUSION: Although the articles reviewed revealed four groups of symptoms that tended to cluster, there is limited consistency in the way in which SCs and variables associated with them are identified. This is largely due to a lack of agreement about a robust, clinically relevant definition of SCs. Future research should focus on patients' subjective experience of SCs to inform a clinically relevant definition of SCs and how they are managed over time.
Clark, K, Lam, L, Currow, DC & Agar, M 2014, 'A Prospective Study to Investigate Contributory Factors That Lead to Constipation in Palliative Care Patients', JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, vol. 47, no. 6, pp. E1-E4.View/Download from: Publisher's site
Bush, SH, Kanji, S, Pereira, JL, Davis, DHJ, Currow, DC, Meagher, DJ, Rabheru, K, Wright, DK, Bruera, E, Agar, M, Hartwick, M, Gagnon, PR, Gagnon, B, Breitbart, W, Regnier, L & Lawlor, PG 2014, 'Treating an established episode of delirium in palliative care: expert opinion and review of the current evidence base with recommendations for future development.', Journal of Pain and Symptom Management, vol. 48, no. 2, pp. 231-248.View/Download from: UTS OPUS or Publisher's site
CONTEXT: Delirium is a highly prevalent complication in patients in palliative care settings, especially in the end-of-life context. OBJECTIVES: To review the current evidence base for treating episodes of delirium in palliative care settings and propose a framework for future development. METHODS: We combined multidisciplinary input from delirium researchers and other purposely selected stakeholders at an international delirium study planning meeting. This was supplemented by a literature search of multiple databases and relevant reference lists to identify studies regarding therapeutic interventions for delirium. RESULTS: The context of delirium management in palliative care is highly variable. The standard management of a delirium episode includes the investigation of precipitating and aggravating factors followed by symptomatic treatment with drug therapy. However, the intensity of this management depends on illness trajectory and goals of care in addition to the local availability of both investigative modalities and therapeutic interventions. Pharmacologically, haloperidol remains the practice standard by consensus for symptomatic control. Dosing schedules are derived from expert opinion and various clinical practice guidelines as evidence-based data from palliative care settings are limited. The commonly used pharmacologic interventions for delirium in this population warrant evaluation in clinical trials to examine dosing and titration regimens, different routes of administration, and safety and efficacy compared with placebo. CONCLUSION: Delirium treatment is multidimensional and includes the identification of precipitating and aggravating factors. For symptomatic management, haloperidol remains the practice standard. Further high-quality collaborative research investigating the appropriate treatment of this complex syndrome is needed.
Hegarty, M, Breaden, K, Agar, M, Devery, K, Goh, C, Shaw, R, Swetenham, K & Currow, DC 2014, 'Asia Pacific Palliative Care Development Through Education', JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, vol. 47, no. 2, pp. E7-E9.View/Download from: Publisher's site
Sweet, L, Adamis, D, Meagher, DJ, Davis, D, Currow, DC, Bush, SH, Barnes, C, Hartwick, M, Agar, M, Simon, J, Breitbart, W, MacDonald, N & Lawlor, PG 2014, 'Ethical challenges and solutions regarding delirium studies in palliative care.', Journal of Pain and Symptom Management, vol. 48, no. 2, pp. 259-271.View/Download from: UTS OPUS or Publisher's site
CONTEXT: Delirium occurs commonly in settings of palliative care (PC), in which patient vulnerability in the unique context of end-of-life care and delirium-associated impairment of decision-making capacity may together present many ethical challenges. OBJECTIVES: Based on deliberations at the Studies to Understand Delirium in Palliative Care Settings (SUNDIPS) meeting and an associated literature review, this article discusses ethical issues central to the conduct of research on delirious PC patients. METHODS: Together with an analysis of the ethical deliberations at the SUNDIPS meeting, we conducted a narrative literature review by key words searching of relevant databases and a subsequent hand search of initially identified articles. We also reviewed statements of relevance to delirium research in major national and international ethics guidelines. RESULTS: Key issues identified include the inclusion of PC patients in delirium research, capacity determination, and the mandate to respect patient autonomy and ensure maintenance of patient dignity. Proposed solutions include designing informed consent statements that are clear, concise, and free of complex phraseology; use of concise, yet accurate, capacity assessment instruments with a minimally burdensome schedule; and use of PC friendly consent models, such as facilitated, deferred, experienced, advance, and proxy models. CONCLUSION: Delirium research in PC patients must meet the common standards for such research in any setting. Certain features unique to PC establish a need for extra diligence in meeting these standards and the employment of assessments, consent procedures, and patient-family interactions that are clearly grounded on the tenets of PC.
Luckett, T, Phillips, JL, Agar, M, Virdun, C, Green, AR & Davidson, PM 2014, 'Elements of effective palliative care models: a rapid review', BMC Health Services Research, vol. 14, pp. 1-22.View/Download from: UTS OPUS or Publisher's site
Background: Population ageing, changes to the profiles of life-limiting illnesses and evolving societal attitudes prompt a critical evaluation of models of palliative care. We set out to identify evidence-based models of palliative care to inform policy reform in Australia.
Dong, S, Butow, P, Tong, A, Lovell, M & Agar, M 2014, '"Longing for an End to the Emotional Rollercoaster": A Qualitative Study on Patients' Attitudes and Experiences of Multiple Symptoms in Advanced Cancer', PSYCHO-ONCOLOGY, vol. 23, pp. 221-222.
Dong, S, Butow, P, Tong, A, Lovell, M & Agar, M 2014, '"Finding the Balance Between Art and Science": Healthcare Providers' Perspectives on Multiple Symptoms in Advanced Cancer', PSYCHO-ONCOLOGY, vol. 23, pp. 223-224.
Hosie, A, Agar, M, Lobb, E, Davidson, PM & Phillips, JL 2014, 'Palliative care nurses' recognition and assessment of delirium symptoms: a qualitative study using Critical Incident Technique.', International Journal of Nursing Studies, vol. 51, no. 10, pp. 1353-1365.View/Download from: UTS OPUS or Publisher's site
Delirium is prevalent in palliative care inpatient settings and management is often challenging. Despite nurses integral patient care role, little is known about palliative care nurses capacity to recognise, assess and respond to patients delirium symptoms.
Phillips, JL, Lam, L, Luckett, T, Agar, M & Currow, D 2014, 'Is the Life Space Assessment applicable to a palliative care population? : A brief methodological report on its relationship to measures of performance and quality of life. Brief Methodological Report.', Journal of Pain and Symptom Management, vol. 47, no. 6, pp. 1121-1127.View/Download from: UTS OPUS or Publisher's site
The spatial environments that palliative care patients frequent for business and leisure constrict as their disease progresses and their physical functioning deteriorates. Measuring a persons movement within his or her own environment is a clinically relevant and patient-centered outcome because it measures function in a way that reflects actual and not theoretical participation.
Clark, K, Agar, MR & Currow, D 2013, 'Metoclopramide for chronic nausea in adult palliative care patients with advanced cancer', Cochrane Database of Systematic Reviews, vol. 2013, no. 11.View/Download from: Publisher's site
© 2013 The Cochrane Collaboration. This is the protocol for a review and there is no abstract. The objectives are as follows: To determine the efficacy of metoclopramide administered by any route to control the chronic nausea of cancer which is advanced as defined by the fact the cancer is no longer amenable to cure. Additionally, if the data permit: to identify which adverse reactions to the medication were documented, the doses at which they occurred and the characteristics of the affected people; the frequency with which adverse events occur; the duration of therapeutic response that could be expected.
Morandi, A, Davis, D, Taylor, JK, Bellelli, G, Olofsson, B, Kreisel, S, Teodorczuk, A, Kamholz, B, Hasemann, W, Young, J, Agar, M, de Rooij, SE, Meagher, D, Trabucchi, M & MacLullich, AM 2013, 'Consensus and variations in opinions on delirium care: a survey of European delirium specialists', INTERNATIONAL PSYCHOGERIATRICS, vol. 25, no. 12, pp. 2067-2075.View/Download from: UTS OPUS or Publisher's site
Connell, T, Fernandez, RS, Tran, D, Griffiths, R, Harlum, J & Agar, M 2013, 'Quality of life of community-based palliative care clients and their caregivers', PALLIATIVE & SUPPORTIVE CARE, vol. 11, no. 4, pp. 323-330.View/Download from: UTS OPUS or Publisher's site
Agar, M 2013, 'CARE FOR PEOPLE LIVING WITH CANCER IN RESIDENTIAL AGED CARE', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY, vol. 9, pp. 69-69.
Agar, M., White, K. & Currow, D. 2013, 'FEASIBILITY OF MEASUREMENT OF FUNCTION IN ADVANCED CANCER: COMPARISON OF THE 6-MINUTE WALK TEST, 2-MINUTE WALK TEST, ISOMETRIC ARM EXERCISES AND READING NUMBERS ALOUD', JOURNAL OF THORACIC ONCOLOGY, vol. 8, pp. S423-S423.
Agar, M 2013, 'RECENT DEVELOPMENTS IN THERAPEUTICS AND INTERVENTIONS IN PALLIATIVE CARE', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY, vol. 9, pp. 94-95.
Lobb, E, Lane, L, Lacey, J, Chochinov, HM, Kelly, B, Agar, M, Mowll, J, Links, M, Kearsley, J, Liauw, W, Lynch, J & Brock, C 2013, 'A Pilot Study of an Intervention for Couples to Facilitate Communication Where One Member of the Couple has Advanced Cancer', PSYCHO-ONCOLOGY, vol. 22, pp. 1-2.View/Download from: Publisher's site
Agar, M 2013, 'EAPC early researcher award 2013 - Reflections on winning', European Journal of Palliative Care, vol. 20, no. 5, p. 248.
McCaffrey, N, Agar, M, Harlum, J, Karnon, J, Currow, D & Eckermann, S 2013, 'Is home-based palliative care cost-effective? An economic evaluation of the Palliative Care Extended Packages at Home (PEACH) pilot.', BMJ supportive & palliative care, vol. 3, no. 4, pp. 431-435.View/Download from: UTS OPUS or Publisher's site
OBJECTIVE: The aim of this study was to evaluate the cost-effectiveness of a home-based palliative care model relative to usual care in expediting discharge or enabling patients to remain at home. DESIGN: Economic evaluation of a pilot randomised controlled trial with 28 days follow-up. METHODS: Mean costs and effectiveness were calculated for the Palliative Care Extended Packages at Home (PEACH) and usual care arms including: days at home; place of death; PEACH intervention costs; specialist palliative care service use; acute hospital and palliative care unit inpatient stays; and outpatient visits. RESULTS: PEACH mean intervention costs per patient ($3489) were largely offset by lower mean inpatient care costs ($2450) and in this arm, participants were at home for one additional day on average. Consequently, PEACH is cost-effective relative to usual care when the threshold value for one extra day at home exceeds $1068, or $2547 if only within-study days of hospital admission are costed. All estimates are high uncertainty. CONCLUSIONS: The results of this small pilot study point to the potential of PEACH as a cost-effective end-of-life care model relative to usual care. Findings support the feasibility of conducting a definitive, fully powered study with longer follow-up and comprehensive economic evaluation.
Nikles, J, Mitchell, GK, Hardy, J, Agar, M, Senior, H, Carmont, S-A, Schluter, PJ, Good, P, Vora, R & Currow, D 2013, 'Do pilocarpine drops help dry mouth in palliative care patients: a protocol for an aggregated series of n-of-1 trials', BMC PALLIATIVE CARE, vol. 12.View/Download from: UTS OPUS or Publisher's site
Hardy, J, Quinn, S, Fazekas, B, Agar, M & Currow, D 2013, 'Can the LANSS scale be used to classify pain in chronic cancer pain trials?', SUPPORTIVE CARE IN CANCER, vol. 21, no. 12, pp. 3387-3391.View/Download from: UTS OPUS or Publisher's site
Agar, M, Ko, DN, Sheehan, C, Chapman, M & Currow, DC 2013, 'Informed Consent in Palliative Care Clinical Trials: Challenging but Possible', JOURNAL OF PALLIATIVE MEDICINE, vol. 16, no. 5, pp. 485-491.View/Download from: UTS OPUS or Publisher's site
Senior, HE, Mitchell, GK, Nikles, J, Carmont, S-A, Schluter, PJ, Currow, DC, Vora, R, Yelland, MJ, Agar, M, Good, PD & Hardy, JR 2013, 'Using aggregated single patient (N-of-1) trials to determine the effectiveness of psychostimulants to reduce fatigue in advanced cancer patients: a rationale and protocol.', BMC palliative care, vol. 12, no. 1, pp. 17-17.View/Download from: UTS OPUS or Publisher's site
BACKGROUND: It is estimated that 29% of deaths in Australia are caused by malignant disease each year and can be expected to increase with population ageing. In advanced cancer, the prevalence of fatigue is high at 70-90%, and can be related to the disease and/or the treatment. The negative impact of fatigue on function (physical, mental, social and spiritual) and quality of life is substantial for many palliative patients as well as their families/carers. METHOD/DESIGN: This paper describes the design of single patient trials (n-of-1 s or SPTs) of a psychostimulant, methylphenidate hydrochloride (MPH) (5 mg bd), compared to placebo as a treatment for fatigue, with a population estimate of the benefit by the aggregation of multiple SPTs. Forty patients who have advanced cancer will be enrolled through specialist palliative care services in Australia. Patients will complete up to 3 cycles of treatment. Each cycle is 6 days long and has 3 days treatment and 3 days placebo. The order of treatment and placebo is randomly allocated for each cycle. The primary outcome is a reduction in fatigue severity as measured by the Functional Assessment of Cancer Therapy-fatigue subscale (FACIT-F). Secondary outcomes include adverse events, quality of life, additional fatigue assessments, depression and Australian Karnovsky Performance Scale. DISCUSSION: This study will provide high-level evidence using a novel methodological approach about the effectiveness of psychostimulants for cancer-related fatigue. If effective, the findings will guide clinical practice in reducing this prevalent condition to improve function and quality of life. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12609000794202.
To, THM, Agar, M, Shelby-James, T, Abernethy, AP, Doogue, M, Rowett, D, Ko, D & Currow, DC 2013, 'Off-label prescribing in palliative care - a cross-sectional national survey of Palliative Medicine doctors', PALLIATIVE MEDICINE, vol. 27, no. 4, pp. 320-328.View/Download from: UTS OPUS or Publisher's site
Hardy, J, Quinn, S, Fazekas, B, Eckermann, S, Agar, MR, Spruyt, O, Rowett, D & Currow, D 2013, 'Ketamine in the Management of Cancer Pain Reply', JOURNAL OF CLINICAL ONCOLOGY, vol. 31, no. 10, pp. 1375-1376.View/Download from: Publisher's site
Allcroft, P, Currow, D, Margitinovic, V, Greene, A, Agar, M, Clark, K & Abernethy, A 2013, 'THE ROLE OF BENZODIAZEPINES IN BREATHLESSNESS: A SINGLE-SITE, OPEN-LABEL, PILOT OF OPIOID SPARING ABILITY', RESPIROLOGY, vol. 18, pp. 57-57.
Luckett, T, Davidson, PM, Lam, L, Phillips, JL, Currow, D & Agar, M 2013, 'Do Community Specialist Palliative Care Services That Provide Home Nursing Increase Rates of Home Death for People with Life-Limiting Illnesses? A Systematic Review and Meta-Analysis of Comparative Studies', Journal of Pain and Symptom Management, vol. 45, no. 2, pp. 279-297.View/Download from: UTS OPUS or Publisher's site
Context. Systematic reviews and meta-analyses suggest that community specialist palliative care services (SPCSs) can avoid hospitalizations and enable home deaths. But more information is needed regarding the relative efficacies of different models. Family caregivers highlight home nursing as the most important service, but it is also likely the most costly.
Hosie, A, Davidson, PM, Agar, M, Sanderson, CR & Phillips, JL 2013, 'Delirium prevalence, incidence, and implications for screening in specialist palliative care inpatient settings: A systematic review', Palliative Medicine, vol. 27, no. 6, pp. 486-498.View/Download from: UTS OPUS or Publisher's site
Background: Delirium is a serious neuropsychiatric syndrome frequently experienced by palliative care inpatients. This syndrome is under-recognized by clinicians. While screening increases recognition, it is not a routine practice. Aim and design: This systematic review aims to examine methods, quality, and results of delirium prevalence and incidence studies in palliative care inpatient populations and discuss implications for delirium screening.
Phillips, JL, West, P, Davidson, PM & Agar, M 2013, 'Does case conferencing for people with advanced dementia living in nursing homes improve care outcomes: Evidence from an integrative review?', International Journal of Nursing Studies, vol. 50, no. 8, pp. 1122-1135.View/Download from: UTS OPUS or Publisher's site
Objective: This integrative review aimed to appraise the evidence for case conferencing as an intervention to improve palliative care outcomes for older people living with advanced dementia in nursing homes.
Lovell, M, Agar, M, Luckett, T, Davidson, PM, Green, AR & Clayton, J 2013, 'Australian survey of current practice and guideline use in adult cancer pain assessment and management: Perspectives of palliative care physicians', Journal of Palliative Medicine, vol. 16, no. 11, pp. 1403-1409.View/Download from: UTS OPUS or Publisher's site
Background: Cancer pain continues to be undertreated, despite the availability of evidence-based guidelines. The Australian National Pain Strategy identified establishment of systems and guidelines to adequately manage cancer pain as a high priority.
Allcroft, P, Margitanovic, V, Greene, A, Agar, MR, Clark, K, Abernethy, AP & Currow, DC 2013, 'The role of benzodiazepines in breathlessness: a single site, open label pilot of sustained release morphine together with clonazepam.', Journal of palliative medicine, vol. 16, no. 7, pp. 741-744.View/Download from: UTS OPUS or Publisher's site
BACKGROUND: Breathlessness at rest or on minimal exertion despite optimal treatment of underlying cause(s) is distressing and prevalent. Opioids can reduce the intensity of chronic refractory breathlessness and an anxiolytic may be of benefit. This pilot aimed to determine the safety and feasibility of conducting a phase III study on the intensity of breathlessness by adding regular benzodiazepine to low-dose opioid. METHODS: This is a single site, open label phase II study of the addition of regular clonazepam 0.5 mg nocte orally to Kapanol(R) 10 mg (sustained release morphine sulphate) orally mane together with docusate/sennosides in people with modified Medical Research Council Scale 2. Breathlessness intensity on day four was the efficacy outcome. Participants could extend for another 10 days if they achieved >15% reduction over their own baseline breathlessness intensity. RESULTS: Eleven people had trial medication (eight males, median age 78 years (68 to 89); all had COPD; median Karnofsky 70 (50 to 80); six were on long-term home oxygen. Ten people completed day four. One person withdrew because of unsteadiness on day four. Five participants reached the 15% reduction, but only three went on to the extension study, all completing without toxicity. CONCLUSION: This study was safe, feasible and there appears to be a group who derive benefits comparable to titrated opioids. Given the widespread use of benzodiazepines for the symptomatic treatment of chronic refractory breathlessness and its poor evidence base, there is justification for a definitive phase III study.
Crawford, G, Agar, M, Quinn, S, Phillips, JL, Litster, C, Michael, N, Doogue, M, Rowett, D & Currow, D 2013, 'Pharmacovigilance in hospice/palliative care. Net effect of haloperidol for delirium', Journal Of Palliative Medicine, vol. 16, no. 11, pp. 1335-1341.View/Download from: UTS OPUS or Publisher's site
Prescribing practice in hospice/palliative care is largely extrapolated from other areas of clinical practice, with few studies of net medication effects (benefits and harms) in hospice/palliative care to guide prescribing decisions. Hospice/palliative care patients differ in multiple ways from better studied participant groups, hence the applicability of studies in other participant groups is uncertain. Haloperidol, a butyrophenone derivative and dopamine antagonist, is commonly prescribed for nausea, vomiting, and delirium in hospice/palliative care. Its frequent use in delirium occurs despite little evidence of the effect of antipsychotics on the untreated course of delirium. The aim of this study was to examine the immediate and short-term clinical benefits and harms of haloperidol for delirium in hospice/palliative care patients. METHOD: A consecutive cohort of participants from 14 centers across four countries who had haloperidol commenced for delirium were recruited. Data were collected at three time points: baseline, 48 hours (clinical benefits), and day 10 (clinical harms). Investigators were also able to report clinical harms at any time up to 14 days after it was commenced. RESULTS: Of the 119 participants included, the average dose was 2.1?mg per 24 hours; 42 of 106 (35.2%) reported benefit at 48 hours. Harm was reported in 14 of 119 (12%) at 10 days, the most frequent being somnolence (n=11) and urinary retention (n=6). Seven participants had their medication ceased due to harms (2 for somnolence and 2 for rigidity). Approximately half (55/119) were still being treated with haloperidol after 10 days. CONCLUSION: Overall, 1 in 3 participants gained net clinical benefit at 10 days.
Breaden, K, Phillips, JL, Agar, M, Grbich, C, Abernethy, A & Currow, D 2013, 'The clinical and social dimension of prescribing home oxygen for the relief of refractory dyspnea', Journal Of Palliative Medicine, vol. 16, no. 3, pp. 268-273.View/Download from: UTS OPUS or Publisher's site
Background: Chronic breathlessness is a significant problem in palliative care and oxygen is often prescribed in an attempt to ameliorate it. Often, this prescription falls outside the current funding guidelines for long-term home oxygen use. The aim of this qualitative study was to understand the factors that most influence Australian specialist palliative care nurses' initiation of home oxygen for their patients. Methods: A series of focus groups were held across three states in Australia in 2011 involving specialist palliative care nurses. The invitation to the nurses was sent by e-mail through their national association. Recorded and transcribed data were coded for themes and subthemes. A summary, which included quotes, was provided to participants to confirm. Results: Fifty-one experienced palliative care nurses participated in seven focus groups held in three capital cities. Two major themes were identified: 1) logistic/health service issues (not reported in this paper as specific to the Australian context) involving the local context of prescribing and, 2) clinical care issues that involved assessing the patient's need for home oxygen and ongoing monitoring concerns. Palliative care nurses involved in initiating or prescribing oxygen often reported using oxygen as a second-line treatment after other interventions had been trialed and these had not provided sufficient symptomatic benefit. Safety issues were a universal concern and a person living alone did not emerge as a specific issue among the nurses interviewed. Conclusion: The role of oxygen is currently seen as a second-line therapy in refractory dyspnea by specialist palliative care nurses.
Thongkhamcharoen, R, Breaden, K, Agar, M & Hamzah, E 2012, 'Dyspnea management in palliative home care: a case series in malaysia.', Indian journal of palliative care, vol. 18, no. 2, pp. 128-133.View/Download from: UTS OPUS or Publisher's site
Managing dyspnea at home is a challenging task. Although a competent palliative home care team can assist a patient to live at home with better pain control, dyspnea is usually not as well managed. In the Asian context, there are few research studies in dyspnea management in palliative home care. This paper aims to illustrate the cultural context that has an impact on dyspnea management at home and the assessment and management of dyspnea in a community palliative care setting in Malaysia. This paper reports on a study of 5 dyspneic patients suffering from both cancer-related and non-cancer-related dyspnea. Its focus is on a unique Asian cultural belief system that affects communication about prognosis and the role of family in palliative home care. In addition, this paper also describes dyspnea assessment, the barriers to morphine use, benzodiazepine prescription, oxygen therapy, and nonpharmacologic intervention in this center.
Dimoska, A, Butow, PN, Lynch, J, Hovey, E, Agar, M, Beale, P & Tattersall, MHN 2012, 'Implementing patient question-prompt lists into routine cancer care', PATIENT EDUCATION AND COUNSELING, vol. 86, no. 2, pp. 252-258.View/Download from: UTS OPUS or Publisher's site
Hardy, J, Quinn, S, Fazekas, B, Plummer, J, Eckermann, S, Agar, M, Spruyt, O, Rowett, D & Currow, D 2012, 'A Randomized, Double-Blind, Placebo-Controlled Study to Assess the Efficacy and Toxicity of Subcutaneous Ketamine in the Management of Cancer Pain', JOURNAL OF PALLIATIVE CARE, vol. 28, no. 3, pp. 202-202.
White, K, Agar, M & Currow, D 2012, 'FEASIBILITY OF MEASUREMENT OF FUNCTION IN ADVANCED CANCER: COMPARISON OF THE 6-MINUTE WALK TEST, 2-MINUTE WALK TEST, ISOMETRIC ARM EXERCISES AND READING NUMBERS ALOUD', JOURNAL OF THORACIC ONCOLOGY, vol. 7, no. 9, pp. S187-S188.
Agar, M & Luckett, T 2012, 'Outcome measures for palliative care research', Current Opinion in Supportive and Palliative Care, vol. 6, no. 4, pp. 500-507.View/Download from: UTS OPUS or Publisher's site
Purpose of review: The aim of this review is to summarize the current state of the science in physical symptoms and other end-of-life care domains and/or illness-specific outcomes in palliative care. The review includes progress in outcome measure development and interpretation, with specific reference to the clinical trial context. Recent findings: There are validated measures in a wide range of domains, which can measure outcomes specific to palliative care interventions; which are sufficiently validated to ensure the results of the trial are robust and measuring differences which are both clinically meaningful. In several areas, consensus is emerging which will allow consolidation of outcome measurement and the ability to extend measurement from the clinical trial setting into routine clinical practice. Potential exists for composite measures covering areas prioritized by patients to improve comparability and efficiency. Adverse events need to be measured with the same degree of rigor as efficacy outcomes. Summary: Clinical trials of palliative care interventions need to consider a range of outcomes, however, the choice and timing of measurement of the primary outcome need to be guided by the domain most likely to be influenced by the intervention.
Agar, M 2012, 'Pain and delirium', Cme Journal Geriatric Medicine, vol. 14, no. 1, pp. 9-15.
Pain and delirium are significant clinical issues in the older person, which both impact on outcomes. Pain and delirium overlap in several ways including interaction of pathophysiological processes; analgesics being predisposing or precipitating factors in delirium; and uncontrolled pain as a risk for delirium. Assessment requires careful review of clinical features and potential precipitants of both pain and delirium. Current strategies for clinical management to both maximise pain control and reduce delirium risk are discussed. © 2012 Rila Publications Ltd.
Hardy, J, Quinn, S, Fazekas, B, Plummer, J, Eckermann, S, Agar, M, Spruyt, O, Rowett, D & Currow, DC 2012, 'Randomized, Double-Blind, Placebo-Controlled Study to Assess the Efficacy and Toxicity of Subcutaneous Ketamine in the Management of Cancer Pain', JOURNAL OF CLINICAL ONCOLOGY, vol. 30, no. 29, pp. 3611-3617.View/Download from: UTS OPUS or Publisher's site
Sheehan, C, Agar, M & Currow, DC 2012, 'End-of-Life Research: Do We Need To Build Proxy Consent into All Clinical Trial Protocols Studying the Terminal Phase?', JOURNAL OF PALLIATIVE MEDICINE, vol. 15, no. 9, pp. 962-962.View/Download from: Publisher's site
Shelby-James, TM, Hardy, J, Agar, M, Yates, P, Mitchell, G, Sanderson, C, Luckett, T, Abernethy, AP & Currow, DC 2012, 'Designing and conducting randomized controlled trials in palliative care: A summary of discussions from the 2010 clinical research forum of the Australian Palliative Care Clinical Studies Collaborative', PALLIATIVE MEDICINE, vol. 26, no. 8, pp. 1042-1047.View/Download from: UTS OPUS or Publisher's site
To, T, Agar, M, Shelby-James, T, Abernethy, A, Doogue, M, Rowett, D & Currow, DC 2012, 'Off-Label Prescribing in Palliative Care: A Cross-sectional National Survey of Australian Palliative Medicine Doctors', JOURNAL OF PALLIATIVE CARE, vol. 28, no. 3, pp. 189-190.
Agar, M, Draper, B, Phillips, JL, Collier, A, Harlum, J, Currow, D & Phillips, PA 2012, 'Making decisions about delirium: a qualitative comparison of decision making between nurses working in palliative care, aged care, aged care psychiatry, and oncology.', Palliative Medicine, vol. 26, no. 7, pp. 887-896.View/Download from: UTS OPUS or Publisher's site
Background: Delirium has a significant impact on nursing practice from diagnosis and management, with under-detection and variable management of delirium being international problems. This study aimed to explore nurses' assessment and management of delirium when caring for people with cancer, the elderly or older people requiring psychiatric care in the inpatient setting. Methods: Participants in this qualitative study were nurses working in Australian public hospital inpatient dedicated units in palliative care, aged care (geriatrics), aged care (geriatric) psychiatry and oncology. Semi-structured interviews were used to explore nurses' views about specific areas of delirium assessment and management. Purposive sampling was used and interviews conducted until thematic saturation reached. A thematic content analysis was performed from a grounded theory perspective. Results: A total of 40 participants were included in the study. The analysis revealed four broad analytical themes: (1) superficial recognition and understanding of the operational definition of delirium or recognition of delirium as a syndrome; (2) nursing assessment: investigative versus a problem solving approach; (3) management: maintaining dignity and minimizing chaos; and (4) distress and the effect on others. Discussion: Nurses have limited knowledge of the features of delirium regardless of their specialty discipline. Delirium was uniformly identified as a highly distressing experience for patients, families and staff alike. The majority of nurses had a superficial understanding of delirium management, and adopted a task-orientated approach aimed at addressing the more noticeable problems. These findings have implications for both education and knowledge translation. Innovative approaches are needed to align health professional behaviours with best evidence delirium care.
Connell, T, Griffiths, R, Fernandez, RS, Tran, D, Agar, M & Harlum, J 2011, 'Quality-of-life trajectory of clients and carers referred to a community palliative care service.', International Journal of Palliative Nursing, vol. 17, no. 2, pp. 80-85.View/Download from: UTS OPUS or Publisher's site
Palliative care clients often have a reduced quality of life (QOL). The purpose of this study was to explore the QOL trajectory of clients and carers newly referred to a community palliative care service. A total of 49 clients and 43 carers respectively completed the McGill QOL scale (MQOL) and the caregiver QOL cancer scale (CQOLC) questionnaires. Baseline data relating to demographics, health status, and QOL are presented for the 49 participants and their 43 carers, and these are compared with follow-up data from 22 clients and 13 carers (matched pairs). On average, there were no significant differences between baseline and follow-up QOL scores in any respects for either clients or carers, including measures of burden, disruptiveness, positive adaptation, and financial concerns. Whether this indicates that the care administered succeeded in cancelling out the worsening of the clients' conditions or whether it indicates a shortcoming of the care was not assessed.
Opioids are extremely effective in managing cancer pain, and now are utilized for longer periods of time in cancer patients as the treatment for malignancies has become more successful.  The goals in cancer pain treatment includes maintaining function in patients with cancer pain (especially in earlier stage disease), and palliation in advanced disease.  The perception of the lay public and inexperienced clinicians that addiction is inevitable, often leads to an inappropriate fear to utilize opioids to appropriately manage pain; resulting in persistent under-treatment of cancer pain internationally. [2,3] There is much confusion about the phenomenon of physical dependence and how this can be differentiated from the maladaptive behaviors that constitute a diagnosis of substance abuse. The burden of cancer and associated cancer pain is projected to continue to rise, and is often at an advanced stage at diagnosis in less developed countries.  To be able to provide quality care for this patient population availability of opioids and skilled clinicians in pain management is paramount. In the majority of cases, the main concern is to abate concerns about risks of opioid addiction; to allow adequate pain relief. To understand the infrequent phenomenon of substance abuse in the setting of cancer pain management clear definitions are needed, and review of the epidemiology of occurrence in cancer populations is needed. It is also important to clearly separate the issues of substance abuse at the patient level and diversion of prescribed opioids. There are principles of managing cancer pain in the rare clinical scenario when the risk of substance abuse is high, which can still allow safe management of cancer pain with opioids.
Lobb, EA, Swetenham, K, Agar, M & Currow, DC 2011, 'A Collateral Benefit of Research in Palliative Care', JOURNAL OF PALLIATIVE MEDICINE, vol. 14, no. 9, pp. 986-987.View/Download from: Publisher's site
To, THM, Greene, AG, Agar, MR & Currow, DC 2011, 'A point prevalence survey of hospital inpatients to define the proportion with palliation as the primary goal of care and the need for specialist palliative care', INTERNAL MEDICINE JOURNAL, vol. 41, no. 5, pp. 430-433.View/Download from: UTS OPUS or Publisher's site
Davidson, PM, Jiwa, M, Goldsmith, AJ, McGrath, S, DiGiacomo, M, Phillips, JL, Agar, M, Newton, PJ & Currow, D 2011, 'Decisions for lung cancer chemotherapy: the influence of physician and patient factors', Supportive Care in Cancer, vol. 19, no. 8, pp. 1261-1266.View/Download from: UTS OPUS or Publisher's site
Purpose The purpose of this study is to review the literature examining how the beliefs and behaviours of physicians and patients influence clinical communication, doctor-patient interaction and treatment decisions for lung cancer treatment. Methods Literature was obtained via electronic database searches and hand searching of journals from 1990 to 2011. Results Wide variability in perceptions of the value of chemotherapy in lung cancer is present among both physicians and patients. There is a mismatch in the degree patients and physicians weigh survival, such that patients value survival benefits highly whilst physicians strongly emphasize toxicity and associated symptoms. This lack of congruence between patients and clinicians is influenced by a range of factors and has implications for treatment decisions, long-term survival and quality of life in people affected by lung cancer. Conclusion The divergence of treatment priorities indicates a need for improved communication strategies addressing the needs and concerns of both patients and clinicians. Patients should understand the benefits and risks of treatment options, while clinicians can gain a greater awareness of factors influencing patients' decisions on treatments. Reflecting these perspectives and patient preferences for lung cancer treatment in clinical guidelines may improve clinician awareness.
Currow, DC, Agar, MR, To, THM, Rowett, D, Greene, A & Abernethy, AP 2011, 'Adverse events in hospice and palliative care: a pilot study to determine feasibility of collection and baseline rates.', Journal of palliative medicine, vol. 14, no. 3, pp. 309-314.View/Download from: UTS OPUS or Publisher's site
BACKGROUND: Continuous quality improvement is fundamental in all health care, including hospice and palliative care. Identifying and systematically reducing symptomatic adverse events is limited in hospice and palliative care because these events are mostly attributed to disease progression. OBJECTIVES: The aim of this study was to assess the feasibility of symptomatic adverse events in hospice and palliative care and assessing their incidence. METHODS: A retrospective, consecutive cohort of notes from a specialist palliative care inpatient service was surveyed by a clinical nurse consultant for symptomatic adverse events: falls, confusion, decreased consciousness, hypo- and hyperglycaemia, urinary retention, and hypotension. Demographic and clinical factors were explored for people at higher risk. RESULTS: Data were available on the most recent admissions of 65 people, generating >900 inpatient days. Fifty people (78%) had events precipitating admission, of whom 31 (62%) had at least one further event during admission. Eleven of 15 people who were admitted without an event experienced at least one during their admissions. Only 4 did not have an adverse event. During their stay, there were 0.13 (standard deviation [SD]=0.19) events per patient per day. No drug-drug or drug-host events were noted. No clinical or demographic factors predicted groups at higher risk. CONCLUSIONS: This pilot highlights the feasibility of collecting, and ubiquity of, symptomatic adverse events, and forms a baseline against which future interventions to decrease the frequency or intensity can be measured. Given the frailty of hospice and palliative patients, any adverse event is likely to accelerate irreversibly their systemic decline.
Currow, DC, Agar, MR & Abernethy, AP 2011, 'Tackling the challenges of clinical trials in palliative care', Pharmaceutical Medicine, vol. 25, no. 1, pp. 7-15.View/Download from: UTS OPUS or Publisher's site
There is an ethical imperative to provide the best quality of care for all people, including people at the end of life. In order to provide such care, each intervention used in clinical practice must be tested objectively for net clinical benefit (response and toxicity). For pharmacological and non-pharmacological interventions, the gold standard of evidence remains a phase III randomized, controlled study. In palliative care, there is a gradually emerging evidence base for clinical practice derived from rigorously designed and conducted interventional studies. Such studies can effectively recruit, even in this clinical setting, to completion.There are design and implantation challenges in all controlled clinical trials. Some issues are highly likely in palliative care and will influence trial design and analysis including expected attrition unrelated to the intervention, wide variation in the diagnosis and timing of referral to individual palliative care services and responsible reporting of serious adverse events. Factors that are not unique to palliative care but are often magnified in such studies include concerns by referrers and participants about randomization and blinding, how and when to measure endpoints that are clinically relevant, how to minimize the burden of data collection, ensuring studies are adequately powered and how best to deal with primary outcomes that are subjective. Many studies in the palliative care population have successfully overcome these challenges by thoughtful study design. Factors associated with successful (palliative care) study completion include (i) a shared vision about what the research is designed to achieve; (ii) governance structures independent of the researchers; (iii) ways of defining standard practice for the control arm using best available evidence and consensus; (iv) face-to-face meetings especially for protocol development; (v) adequate funding given estimates that four to six palliative care patients will be s...
Currow, D, Burns, C, Agar, M, Phillips, JL, McCaffrey, N & Abernethy, A 2011, 'Palliative caregivers who would not take on the role again', Journal of Pain and Symptom Management, vol. 41, no. 4, pp. 661-672.View/Download from: UTS OPUS or Publisher's site
Abstract Context Health and social services rely heavily on family and friends for caregiving at the end of life. Objectives This study sought to determine the prevalence and factors associated with an unwillingness to take on the caregiving role again by interviewing former caregivers of palliative care patients. Methods The setting for this study was South Australia, with a population of 1.6 million people (7% of the Australian population) and used the South Australian Health Omnibus, an annual, face-to-face, cross-sectional, whole-of-population, multistage, systematic area sampling survey, which seeks a minimum of 3000 respondents each year statewide. One interview was conducted per household with the person over the age of 15 who most recently had a birthday. Using two years of data (n = 8377; 65.4% participation rate), comparisons between those who definitely would care again and those who would not was undertaken.
Connell, T, Fernandez, RS, Griffiths, R, Tran, D, Agar, M, Harlum, J & Langdon, R 2010, 'Perceptions of the impact of health-care services provided to palliative care clients and their carers.', International journal of palliative nursing, vol. 16, no. 6, pp. 274-284.View/Download from: Publisher's site
A wide range of services are provided to palliative care clients to alleviate pain and improve their quality of life. The purpose of this study was to explore the perceptions of clients and their carers regarding palliative care services in New South Wales, Austalia. Ten patients and their carers (n = 7) were randomly selected from a sample of palliative care clients and were informed of the study and interviewed. Interview data were coded independently by three researchers and thematic analysis was undertaken. The themes identified were similar for both clients and carers and included: access to services; service provision; impact on way of life; usefulness of services; and staffing. An additional theme identified by clients was the burden of caregiving on carers. Knowledge of perceptions and concerns of client and carers is important to consider when planning palliative care services.
Agar, M 2010, 'Palliative care: Compassion, care and complexity', Cancer Forum, vol. 34, no. 2, pp. 73-74.
Sanderson, C & Agar, M 2010, 'Delirium in advanced cancer', Cancer Forum, vol. 34, no. 2, pp. 77-82.
Delirium is a distressing and under-diagnosed syndrome of acute alteration in mental state. It occurs frequently in patients with advanced cancer and is often associated with a worsening of prognosis and difficult challenges in symptom management. Given its associations with older age, recognition and management of delirious patients are likely to become an even more important aspect of oncological practice in the future. The potential for prevention of delirium is being studied, and protocols which involve modifications in hospital care, in addition to screening and rapid identification and treatment of precipitants, may reduce the burden of the condition. However, such approaches require further study and validation in an advanced cancer population. Routine use of appropriate and validated screening tools is a low burden strategy which is likely to improve diagnosis, care and understanding of delirium. The evidence to guide pharmacological management is not strong. Well designed clinical trials are urgently needed in order to improve supportive care outcomes for delirious patients and to clarify the role of antipsychotic and other medications in symptomatic management.
Currow, D & Agar, M 2010, 'The Necessary Work Program for Safe Delivery of Combinations of Injectable Medications', JOURNAL OF PALLIATIVE MEDICINE, vol. 13, no. 9, pp. 1052-1052.View/Download from: Publisher's site
Currow, DC, Agar, M, Plummer, JL, Blyth, FM & Abernethy, AP 2010, 'Chronic pain in South Australia - population levels that interfere extremely with activities of daily living', AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH, vol. 34, no. 3, pp. 232-239.View/Download from: Publisher's site
Agar, M, To, T, Plummer, J, Abernethy, A & Currow, D 2010, 'Anti-Cholinergic Load, Health Care Utilization, and Survival in People with Advanced Cancer: A Pilot Study', JOURNAL OF PALLIATIVE MEDICINE, vol. 13, no. 6, pp. 745-752.View/Download from: Publisher's site
Clark, K, Lam, LT, Agar, M, Chye, R & Currow, DC 2010, 'The impact of opioids, anticholinergic medications and disease progression on the prescription of laxatives in hospitalized palliative care patients: a retrospective analysis', PALLIATIVE MEDICINE, vol. 24, no. 4, pp. 410-418.View/Download from: Publisher's site
Currow, DC, Shelby-James, TM, Agar, M, Plummer, J, Rowett, D, Glare, P, Spruyt, O & Hardy, J 2010, 'Planning phase III multi-site clinical trials in palliative care: the role of consecutive cohort audits to identify potential participant populations', SUPPORTIVE CARE IN CANCER, vol. 18, no. 12, pp. 1571-1579.View/Download from: Publisher's site
Currow, D, Smith, J, Davidson, PM, Newton, PJ, Agar, M, Care, MP & Abernethy, A 2010, 'Do the Trajectories of Dyspnea Differ in Prevalence and Intensity By Diagnosis at the End of Life? A Consecutive Cohort Study', Journal of Pain and Symptom Management, vol. 39, no. 4, pp. 680-690.View/Download from: UTS OPUS
Context. Breathlessness reportedly worsens as death approaches for many people, but the differences in intensity and time course between underlying causes are not well described. Objectives. To determine differences in the intensity of breathlessness by diagnosis over time as death approaches in a consecutive cohort seen by a specialist palliative care service. Methods. Patients referred to Silver Chain Hospice Care Service over a period of four years (January 2004 to December 2007) had dyspnea evaluated at every clinical encounter until death. A numeric rating scale (NRS) was used to measure the intensity. Patients were categorized into five clusters (lung cancer, secondary cancer to lung, heart failure, end-stage pulmonary disease, and no identifiable cardiorespiratory cause) at three time points (60e53 [T3], 30e23 [T2], and 7e0 [T1] days before death [T0]). Group differences were assessed using analysis of variance. Joinpoint regression models defined significant changes in mean breathlessness intensity.
Ward, AM, Agar, M & Koczwara, B 2009, 'Collaborating or co-existing: a survey of attitudes of medical oncologists toward specialist palliative care', PALLIATIVE MEDICINE, vol. 23, no. 8, pp. 698-707.View/Download from: Publisher's site
Agar, M, Currow, D, Plummer, J, Seidel, R, Carnahan, R & Abernethy, AP 2009, 'Changes in anticholinergic load from regular prescribed medications in palliative care as death approaches', PALLIATIVE MEDICINE, vol. 23, no. 3, pp. 257-265.View/Download from: Publisher's site
Currow, DC, Agar, M, Smith, J & Abernethy, AP 2009, 'Does palliative home oxygen improve dyspnoea? A consecutive cohort study', PALLIATIVE MEDICINE, vol. 23, no. 4, pp. 309-316.View/Download from: Publisher's site
Agar, M, Currow, D, Plummer, J, Seidel, R, Carnahan, R & Abernethy, AP 2009, 'Changes in Anticholinergic Load From Regular Prescribed Medications in Palliative Care as Death Approaches Editorial Comment', JOURNAL OF UROLOGY, vol. 182, no. 6, pp. 2840-2840.
OBJECTIVE: The objective of this study is to provide an expert review of delirium in the context of palliative care. METHODS: Based on a primary selection criterion, firstly, studies were included for review if the population studied either had a diagnosis of advanced cancer or was receiving palliative care; alternatively, in the absence of data derived from these populations, studies conducted in other populations were included. Secondly, from the studies meeting the primary selection criterion, we selected those that examined specific standard outcome measures. Thirdly, we selected studies and literature reviews that identified delirium research issues. RESULTS: Delirium occurs commonly in the context of palliative care where it is likely to cause heightened distress for patients, carers, and families alike, and make interpretation of pain and other symptoms extremely difficult. There is a profound dearth of rigorous studies on delirium in this setting. Ambiguous terminology, varying definitions in internationally recognized classification systems, and failure to use validated assessment tools lead to wide-ranging incidence and prevalence of delirium episodes in such populations. Episodes are usually multifactorial in origin and may portend poor prognosis by preceding death in many cases. Despite this, many are often at least partially reversible with relatively low-burden interventions. The patient's disease status, previous quality of life, and prior expressed wishes regarding goals of care should all be taken into account. Antipsychotics are the pharmacotherapeutic agents most commonly used to control symptoms despite limited evidence either supporting their efficacy or examining their adverse event profile. Often, symptomatic control alone is indicated. In cases with refractory symptoms, deeper or "palliative" sedation may be required. CONCLUSION: Further research is needed regarding delirium recognition, phenomenology, the development of low-burden instrum...
Agar, M & Lawlor, P 2008, 'Delirium in cancer patients: a focus on treatment-induced psychopathology', CURRENT OPINION IN ONCOLOGY, vol. 20, no. 4, pp. 360-366.
Clark, K, Currow, DC, Agar, M, Fazekas, BS & Abernethy, AP 2008, 'A pilot phase II randomized, cross-over, double-blinded, controlled efficacy study of octreotide versus hyoscine hydrobromide for control of noisy breathing at the end-of-life.', Journal of pain & palliative care pharmacotherapy, vol. 22, no. 2, pp. 131-138.View/Download from: Publisher's site
Noisy breathing at the end of life (noisy breathing ("NB") occurs in up to 90% of people. Interventions have not been systematically evaluated. There has been clinical observation coupled with a proposed mechanism of effect that supports a role for octreotide in management of NB. The aim of this phase II study was to assess ten completed participants for the feasibility of an adequately powered phase III study. This randomized, double-blind, crossover pilot trial recruited participants from an inpatient palliative unit. Participants while well and their proxies simultaneously provided written informed consent. If NB were encountered, people were randomized to 200 mcg octreotide or 400 mcg hyoscine hydrobromide subcutaneously. If subsequent treatment was needed, the other medication was administered. A five point categorical scale documented the nurses' assessment of secretions over six hours. Eighty participants were consented of whom 10 (3 females, 7 males; median age 79, all with advanced cancer) received medication, five in each arm. There was no difference in the median time to administration of the second medication (3 hours). Two participants in each arm had a 2 category reduction of intensity after the second medication. Although feasible to consent and study this population in a way that respects autonomy and dignity even in the terminal hours of life, this pilot study suggests reconsideration of the pharmacological interventions (choice of agents, dosing, timing of dosing and pharmacokinetic profiles), standardizing of non-pharmacological care; and ways to measure directly family distress before further randomized studies for this symptom.
Jeyasingam, L, Agar, M, Soares, M, Plummer, J & Currow, D 2008, 'A prospective study of unmet activity of daily living needs in palliative care inpatients', AUSTRALIAN OCCUPATIONAL THERAPY JOURNAL, vol. 55, no. 4, pp. 266-272.View/Download from: Publisher's site
Agar, M, Currow, DC, Shelby-James, TM, Plummer, J, Sanderson, C & Abernethy, AP 2008, 'Preference for place of care and place of death in palliative care: are these different questions?', PALLIATIVE MEDICINE, vol. 22, no. 7, pp. 787-795.View/Download from: Publisher's site
Agar, M, Currow, DC, Plummer, J, Chye, R & Draper, B 2008, 'Differing management of people with advanced cancer and delirium by four sub-specialties', PALLIATIVE MEDICINE, vol. 22, no. 5, pp. 633-640.View/Download from: Publisher's site
Currow, DC, Agar, M, Tientan, J & Abernethy, AP 2008, 'Multi-site research allows adequately powered palliative care trials; web-based data management makes it achievable today', PALLIATIVE MEDICINE, vol. 22, no. 1, pp. 91-92.View/Download from: Publisher's site
Currow, DC, Agar, M, Sanderson, C & Abernethy, AP 2008, 'Populations who die without specialist palliative care: does lower uptake equate with unmet need?', PALLIATIVE MEDICINE, vol. 22, no. 1, pp. 43-50.View/Download from: Publisher's site
Agar, M., Chye, R., Currow, D. & Draper, B. 2006, 'Survey of current practice: Management of delirium by palliative care, psychogeriatric, geriatric, and oncology specialists in Australia and New Zealand', JOURNAL OF PALLIATIVE CARE, vol. 22, no. 3, pp. 209-210.
Agar, M, Webster, R, Lacey, J, Donovan, B & Walker, A 2004, 'The use of subcutaneous omeprazole in the treatment of dyspepsia in palliative care patients', JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, vol. 28, no. 6, pp. 529-531.View/Download from: Publisher's site
Agar, M, Broadbent, A & Chye, R 2004, 'The management of malignant psoas syndrome: Case reports and literature review', JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, vol. 28, no. 3, pp. 282-293.View/Download from: Publisher's site
Webster, R, Lacey, J, Agar, M, Walker, A & Donovan, B 2004, 'The use of subcutaneous omeprazole in the treatment of dyspepsia in palliative care patients: Case reports and literature review', JOURNAL OF PALLIATIVE CARE, vol. 20, no. 3, pp. 250-250.
This chapter outlines how health professionals may best prevent, recognise, assess, manage and support people with palliative diagnoses who are at risk of delirium, and their families, according to best-evidence and the circumstances, needs and wishes of the person. The chapter also presents evidence-practice gaps in delirium care in palliative contexts, and briefly outlines future directions for research and clinical practice development.
Agar, M & Phillips, JL 2015, 'Palliative medicine and care of the elderly' in The Oxford Textbook of Palliative Medicine, Oxford University Press.
Shaw, J, Beatty, L, Kirsten, L, Kissane, D, Mitchell, G, Kelly, B, Sherman, K, Agar, M, Vaccaro, L & Turner, J 2018, 'Making Community-based Shared Care for Depression in Cancer a Reality: Addressing the Barriers and Facilitators to Support Sustainable Implementation', PSYCHO-ONCOLOGY, WILEY, pp. 216-216.
Shaw, J, Kirsten, L, Beatty, L, Vacarro, L, Kissane, D, Mitchell, G, Kelly, B, Sherman, K, Agar, M & Turner, J 2018, 'Development of cancer-specific manualised depression treatment', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY, WILEY, pp. 57-58.
Shaw, J, Beatty, L, Kirsten, L, Vaccaro, L, Kissane, D, Mitchell, G, Kelly, B, Sherman, K, Agar, M & Turner, J 2018, 'Building bridges: addressing the barriers and facilitators to support sustainable implementation of community-based shared care for depression in cancer', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY, WILEY, pp. 68-69.
Currow, DC, Glare, PA, Watts, G, Louw, S, Martin, P & Clark, K 2018, 'Treating anorexia in people with advanced cancer. a randomised, double blind, controlled trial of megestrol acetate, dexamethasone or placebo', JOURNAL OF CLINICAL ONCOLOGY, AMER SOC CLINICAL ONCOLOGY.View/Download from: Publisher's site
Hosie, A, Phillips, J, Lam, L, Kochovska, S, Brassil, M, Noble, B, Kurrle, S, Cumming, A, Caplan, G, Chye, R, Le, B, Ely, EW, Lawlor, P, Bush, S, Davis, JM, Lovell, M, Brown, L, Fazekas, B, Cheah, SL, Edwards, L & Agar, M 2018, 'A phase II cluster randomised controlled trial of a multicomponent non-pharmacological intervention to prevent delirium for in-patients with advanced cancer (The PRESERVE pilot study)', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY, WILEY, pp. 166-166.
Mileshkin, LR, Yoong, J, Nowak, AK, Philip, J, Lee, BH, Agar, M, Phillips, J, Goodall, S, Schofield, P, Ugalde, A, Ball, D, Currow, D, Stubbin, I, Temel, JS, Clark, K, Lorgelly, PK, Brown, C, Tognela, A, Jurkovic, H, Mersiades, A & Stockler, MR 2018, 'PEARL: A randomised phase 3 trial of early referral to palliative care (PC) for patients with advanced thoracic malignancies', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY, WILEY, pp. 200-200.
Currow, D, Louw, S, McCloud, P, Fazekas, B, Plummer, J, McDonald, C, Agar, M, Clark, K, McCaffrey, N, Abernethy, A & Ekstrom, M 2018, 'Regular Extended Release Morphine For Chronic Breathlessness: A Multi-Centre Double-Blind Randomised Controlled Trial', AMERICAN JOURNAL OF RESPIRATORY AND CRITICAL CARE MEDICINE, International Conference of the American-Thoracic-Society, AMER THORACIC SOC, San Diego, CA.
Currow, D, Louw, S, Hill, J, Fazekas, B, Clark, K, Davidson, P, Mcdonald, C, Sajkov, D, Mccaffrey, N, Doogue, M, Abernethy, A & Agar, M 2018, 'Sertraline in symptomatic chronic breathlessness: a double blind, randomised trial', EUROPEAN RESPIRATORY JOURNAL, 28th International Congress of the European-Respiratory-Society (ERS), EUROPEAN RESPIRATORY SOC JOURNALS LTD, Paris, FRANCE.View/Download from: Publisher's site
Currow, D, Louw, S, Mccloud, P, Fazekas, B, Plummer, J, Mcdonald, C, Agar, M, Clark, K, Mccaffrey, N, Abernethy, A & Ekstrom, M 2018, 'Regular extended release morphine for chronic breathlessness: a multi-centre double-blind RCT', EUROPEAN RESPIRATORY JOURNAL, 28th International Congress of the European-Respiratory-Society (ERS), EUROPEAN RESPIRATORY SOC JOURNALS LTD, Paris, FRANCE.View/Download from: Publisher's site
Sands, MB, Sharma, S, Carpenter, L, Lee, J, Congdon, M, Buchanan, A, Lujic, S, Agar, M & Vardy, J 2017, 'SQiD: Can a single question help clinicians identify delirium in people in hospital with cancer?', PSYCHO-ONCOLOGY, WILEY, pp. 133-134.
Luckett, T, Agar, M, DiGiacomo, M, Ferguson, C, Lam, L, Newton, P & Phillips, J 2017, 'Predictors of Health Status in South Australians Caring for People With Cancer: A Population-Based Study', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY, WILEY, pp. 163-163.
Smith, B, Agar, M, Delaney, G, Descallar, J, Dobell-Brown, K, Grand, M, Aung, JCC, Patel, P, Kaadan, N & Girgis, A 2017, 'Cancer Research Participation by Culturally and Linguistically Diverse (CALD) Patients in South Western Sydney from 2006 to 2016: A Retrospective Analysis', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY, WILEY, pp. 96-96.
Jeon, M, Dhillon, H, Koh, E-S, Nowak, A, Lam, L, Miller, L, Marshall, N & Agar, M 2017, 'SLEEP DISTURBANCE AMONG ADULT PATIENTS WITH PRIMARY AND SECONDARY BRAIN TUMORS AND THEIR CAREGIVERS: A CROSS-SECTIONAL STUDY', NEURO-ONCOLOGY, Joint Conference of 22nd Annual Scientific Meeting and Education Day of the Society-for-Neuro-Oncology / Conference of the Society-for-CNS-Interstitial-Delivery-of-the-Therapeutics (SCIDOT) on Therapeutic Delivery to the CNS, OXFORD UNIV PRESS INC, San Francisco, CA, pp. 206-207.
Disler, RT, Cui, Y, Luckett, T, Donesky, D, Irving, L, Currow, D, Horsfall, L & Smallwood, N 2017, 'Respiratory Nurses' Knowledge And Practice Behaviours In COPD-Related Advance Care Planning: Preliminary Findings From A Cross-Sectional Survey Study', AMERICAN JOURNAL OF RESPIRATORY AND CRITICAL CARE MEDICINE, International Conference of the American-Thoracic-Society (ATS), AMER THORACIC SOC, Washington, DC.
Disler, RT, Luckett, T, Phillips, JL, Johnson, M, Garcia, M, Bhattarai, P, Hutchinson, A, Currow, D, Carrieri-Kohlman, V, Whelan, B, Newton, P, Agar, M, Chye, R, Sheehan, C, Ivynian, S & Davidson, PM 2017, 'Respiratory Patient Experiences In Self-Managing Emergency Department 'near-Miss' For Breathlessness: A Strengths-Based Qualitative Study', AMERICAN JOURNAL OF RESPIRATORY AND CRITICAL CARE MEDICINE, International Conference of the American-Thoracic-Society (ATS), AMER THORACIC SOC, Washington, DC.
Phillips, JL, Kochovska, S, Luckett, T & Agar, M 2017, 'Impacts on Employment, Finances and Lifestyle for Working Age People Facing an Expected Premature Death: A Systematic Review', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY, WILEY, pp. 220-220.
Agar, M, Luckett, T, Luscombe, G, Phillips, J, Beattie, E, Pond, D, Mitchell, G, Cook, J, Davidson, PM, Brooks, D, Houltram, J, Goodall, S & Chenoweth, L 2016, 'Pragmatic cluster randomised controlled trial of facilitated family case conferencing versus usual care for people with advanced dementia living in aged care: effects on end of life care', Palliative Care Nurses Australia Conference, Canberra.
King, M, Currow, D, Agar, M, Hardy, J, Fazekas, B & McCaffrey, N 2016, 'Assessing health-related quality of life (HRQOL) in palliative care settings: head-to-head comparison of the EORTC QLQ-C15-PAL, FACT-G7, FACIT-Pal and FACIT-Pal-14 patient-reported outcome measures (PROMs)', QUALITY OF LIFE RESEARCH, SPRINGER, pp. 75-76.
White, K, Agar, M & Currow, D 2016, 'Breathlessness-inducing exercise in advanced cancer populations. Which measures to use as functional status declines?', EUROPEAN RESPIRATORY JOURNAL, EUROPEAN RESPIRATORY SOC JOURNALS LTD.View/Download from: Publisher's site
Currow, D, Ekstrom, M, Fazekas, B, Plummer, J, Quinn, S, McDonald, C, Agar, M, Clark, K, Eckermann, S & Abernethy, A 2016, 'A phase III, multi-site, randomised, double blind, placebo controlled parallel arm study of daily extended release (ER) morphine for chronic breathlessness', EUROPEAN RESPIRATORY JOURNAL, EUROPEAN RESPIRATORY SOC JOURNALS LTD.View/Download from: Publisher's site
Agar, M, Lawlor, P, Quinn, S, Caplan, G, Draper, B, Rowett, D, Devilee, L, Fazekas, B, Sanderson, C, McCaffrey, N, Hardy, J, Le, B, Eckermann, S, Hill, M & Currow, D 2015, 'Phase III randomized double-blind controlled trial of oral risperidone, haloperidol or placebo with rescue subcutaneous midazolam for delirium management in palliative care', JOURNAL OF THE AMERICAN GERIATRICS SOCIETY, pp. S99-S99.
Lovell, M, Luckett, T, Phillips, J, Agar, M, Ryan, L, Lam, L, McCaffrey, N, Boyle, F, Stubbs, J, Shaw, T, Currow, D, Hosie, A & Davidson, P 2015, 'Clinical Trial Protocol - Implementing Clinical Practice Guidelines For Cancer Pain In Adults To Ensure Equitable, Cost-Effective, Evidence-Based, Person-Centred Care: A Phase III Pragmatic Stepped Wedge Cluster Randomised Controlled Trial Of Guidelines And Screening With Implementation Strategies Versus Guidelines And Screening Alone To Improve Pain In Adults With Cancer Attending Outpatients Oncology And Palliative Care Centres', Asia-Pacific Journal of Clinical Oncology, pp. 162-162.
Lovell, MR, Birch, M-R, Luckett, T, Davidson, PM, Phillips, J, Agar, M, Boyle, FM, Stubbs, J & Spruyt, O 2014, 'PILOT OF PAIN INDICATOR AUDIT TOOL AS PART OF A COMPLEX INTERVENTION TO IMPROVE CANCER PAIN OUTCOMES', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY, pp. 45-45.
Lovell, MR, Luckett, T, Phillips, J, Boyle, F, Davidson, PM, Stubbs, J, Birch, M-R, Spruyt, O & Agar, M 2014, 'CANCER PAIN: CLOSING THE EVIDENCE-PRACTICE GAP', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY, pp. 101-101.
Currow, DC, Clark, K, Cartmill, J, Pather, S, Plummer, J, Eckermann, S, Abernethy, AP, Agar, M & Quinn, S 2012, 'A multi-site, fixed dose, parallel arm, double-blind, placebo controlled, block randomised trial of the addition of infusional octreotide or placebo to regular ranitidine and dexamethasone for the evaluation of vomiting associated with bowel obstruction at the end of life', JOURNAL OF CLINICAL ONCOLOGY.
Clayton, J, Davidson, PM, Phillips, J, Luckett, T, Green, A, Agar, M, Broadbent, A, Lovell, M & ImPaCCT, STOPPPT 2012, 'STOP PAIN PROJECT: A COLLABORATIVE, INTERDISCIPLINARY PROJECT TO IMPROVE THE PERSON-CENTREDNESS OF ASSESSMENT AND MANAGEMENT OF CANCER PAIN', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY, pp. 267-267.
Clark, K, Currow, D, Talley, N, Dinning, P, Lam, L, Agar, M, Davidson, P, Shelby-James, T & Phillips, J 2012, 'Exploring the Underlying Physical Changes That Contribute to Bowel Problems in Palliative Care: Preliminary Result', JOURNAL OF PALLIATIVE CARE, pp. 223-224.
Currow, DC, Hardy, J, Quinn, S, Fazekas, B, Plummer, J, Eckermann, S, Agar, M, Spruyt, O & Debra, R 2012, 'A randomized, double-blind, placebo-controlled study to assess the efficacy and toxicity of subcutaneous ketamine in the management of cancer pain.', JOURNAL OF CLINICAL ONCOLOGY.
Smith, T, Dunford, M, Agar, M, Davidson, P, Jenkins, C & Ingham, J 2014, 'Symptom Burden and Distress in Individuals Undergoing Noninvasive Ventilation for Acute Respiratory Failure.', Elsevier, pp. 39A-39A.
SESSION TITLE: COPD Diagnosis and Evaluation Posters IISESSION TYPE: Original Investigation PosterPRESENTED ON: Wednesday, October 29, 2014 at 01:30 PM - 02:30 PMPURPOSE: Patients with cardiorespiratory disease have a high symptom burden when assessed in inpatient or outpatient settings. Such patients may develop to acute exacerbations, complicated by respiratory failure. Non-invasive ventilation (NIV) is increasingly used to manage acute respiratory failure due to decompensated cardiorespiratory disease. Little is known about the distress experienced by patients undergoing NIV, including symptom burden and delirium point prevalence. To date, no studies have quantified either of these important clinical endpoints.METHODS: Consecutive consenting, English speaking, cognitively intact patients treated outside ICU with NIV for hypercapnic respiratory failure were recruited. Assessment occurred within 36 hours of starting NIV. Symptom burden over the previous 72 hours was assessed measured using the Condensed Memorial Symptom Assessment Scale (CMSAS). This scale assesses the peak bothersomeness of 11 physical symptoms (rated 0-4) and frequency of 3 psychological symptoms (rated 0-4). Delirium point prevalence was assessed using the Confusion Assessment Method for ICU (CAM-ICU).RESULTS: Fifty participants (64% female, mean age 71.9yrs, SD 13.1) were recruited. Prior to NIV, mean arterial pH was 7.30(SD 0.08) and a mean arterial pCO2 58.1mmHg(SD 11.9). Of these, 38% had obstructive lung disease, 14% had heart failure, 30% had both these conditions. The remainder had other causes of respiratory failure. The most prevalent symptoms were breathlessness(92%), dry mouth(88%) and lack of energy(86%). These were also the most bothersome symptoms. The most frequent psychological symptom was worry(64%). The mean total CMSAS score was 1.60(SD 0.66), with the mean physical symptom score of 1.62(SD 0.63) and the mean psychological score of 1.57(SD1.22). Four(8%) patients screened p...
Improving Palliative Care Through Clinical Trials (ImPaCCT)
Palliative Care Clinical Studies Collaborative (PaCCSC)
Ingham Institute of Applied Medical Research
NHMRC Cognitive Decline Partnership Centre