ORCID Profile
0000-0001-9190-8441
Current Organisation
University of Wollongong
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Publisher: AMPCo
Date: 09-2011
DOI: 10.5694/MJA11.10714
Publisher: Elsevier BV
Date: 04-2018
DOI: 10.1016/J.APNR.2017.12.002
Abstract: This study sought to identify clinical, demographic and service-related factors associated with psychological distress amongst outpatient chemotherapy patients. Distress in cancer patients leads to increased risk of psychological comorbidity, contributing to sub-optimal treatment adherence and potentially leading to poorer health outcomes. Screening and recognition of distress and risk factors is an important aspect of holistic care within a multidisciplinary team environment. Data were obtained via survey and chart review of ambulatory chemotherapy patients at three public tertiary referral hospitals in Perth, Western Australia. The DASS-21 was used to screen for psychological distress. Regression analyses were used to assess the relationship between distress and a range of cancer, socioeconomic and treatment factors. Patients with a Karnofsky Performance Score≤80 (OR 3.8, 95% CI [1.7, 78.7]) and average waiting time (between oncology outpatient appointment and commencement of chemotherapy infusion) >60min (OR 2.4, 95% CI [1.04, 5.5]) were at increased risk of moderate-severe distress. Patients with a household income between $AU 50-75,000 p.a. had a lower risk of distress compared to <$25,000 p.a. (OR 0.05, 95% CI [0.01, 0.52]). On sub-scale analysis, depression and anxiety contributed more to overall distress than the stress subscales. Performance status, waiting times and household income were key predictors of distress. Findings could assist clinicians to identify higher-risk population subsets that could benefit from targeted screening and additional psychological and social work support. Findings could also assist administrators to consider the contribution of modifiable factors such as waiting times to patient distress.
Publisher: American Society of Clinical Oncology (ASCO)
Date: 07-2013
Abstract: Having an understanding of the roles that caregivers play in the oncology setting may assist health care professionals in supporting caregivers with these tasks, and targeting services toward those most in need.
Publisher: Cambridge University Press (CUP)
Date: 30-03-2018
DOI: 10.1017/S1478951517000177
Abstract: Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families. Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services. Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE–2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire. Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [ OR ] = 0.29 95% confidence interval [ CI 95% ] = 0.14, 0.59), with patient psychological care ( OR = 0.56 CI 95% = 0.32, 0.98), and with family support ( OR = 0.52 CI 95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services ( OR = 0.98 CI 95% = 0.97, 0.98) and carer payments ( OR = 0.99 CI 95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area ( OR = 0.41 CI 95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients ( OR = 0.60 CI 95% = 0.45, 0.81). While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the identification and evaluation of both patients' and caregivers' experiences, satisfaction, distress, and unmet needs.
Publisher: BMJ
Date: 19-06-2020
DOI: 10.1136/BMJSPCARE-2019-002109
Abstract: General practitioners (GPs) and general practice nurses (GPNs) face increasing demands to provide palliative care (PC) or end-of-life care (EoLC) as the population ages. To enhance primary EoLC, the facilitators and barriers to their provision need to be understood. To provide a comprehensive description of the facilitators and barriers to GP and GPN provision of PC or EoLC. Systematic literature review. Data included papers (2000 to 2017) sought from Medline, PsycInfo, Embase, Joanna Briggs Institute and Cochrane databases. From 6209 journal articles, 62 reviewed papers reported the GP’s and GPN’s role in EoLC or PC practice. Six themes emerged: patient factors personal GP factors general practice factors relational factors co-ordination of care availability of services. Four specific settings were identified: aged care facilities, out-of-hours care and resource-constrained settings (rural, and low-income and middle-income countries). Most GPs provide EoLC to some extent, with greater professional experience leading to increased comfort in performing this form of care. The organisation of primary care at practice, local and national level impose numerous structural barriers that impede more significant involvement. There are potential gaps in service provision where GPNs may provide significant input, but there is a paucity of studies describing GPN routine involvement in EoLC. While primary care practitioners have a natural role to play in EoLC, significant barriers exist to improved GP and GPN involvement in PC. More work is required on the role of GPNs.
Publisher: Springer Science and Business Media LLC
Date: 31-05-2014
Publisher: SAGE Publications
Date: 06-10-2008
Abstract: Needs assessment strategies can facilitate prioritisation of resources. To develop a needs assessment tool for use with advanced cancer patients and caregivers, to prompt early intervation. A convenience s le of 103 health professionals viewed three videotaped consultations involving a simulated patient, his/her caregiver and a health professional, completed the Palliative Care Needs Assessment Tool (PC-NAT) and provided feedback on clarity, content and acceptability of the PC-NAT. Face and content validity, acceptability and feasibility of the PC-NAT were confirmed. Kappa scores indicated adequate inter-rater reliability for the majority of domains the patient spirituality domain and the caregiver physical and family and relationship domains had low reliability. The PC-NAT can be used by health professionals with a range of clinical expertise to identify in iduals’ needs, thereby enabling early intervention. Further psychometric testing and an evaluation to assess the impact of the systematic use of the PC-NAT on quality of life, unmet needs and service utilisation of patients and caregivers are underway.
Publisher: SAGE Publications
Date: 2008
Abstract: Purpose : Cancer specialists can facilitate timely and appropriate access to specialized palliative care (SPC) services. To better match patients' needs with access to SPC services, we must understand factors associated with referral. This study aimed to investigate cancer specialists' referral practices, perceptions of, barriers to and triggers for referral of people with advanced cancer to SPC services.Method : A self-report questionnaire was mailed to all oncologists, clinical haematologists, respiratory physicians and colorectal surgeons in Australia (N = 1713).Results : Out of 699 specialists who participated, 48% reported referring 60% of patients to SPC services. Most frequent reasons for referral were: the future need for symptom control, the presence of a terminal illness or uncontrolled physical symptoms. Psychosocial issues rarely triggered referral. Main reasons reported for not referring included: ability to manage patients' symptoms the absence of symptoms or rapid deterioration. Significant predictors of referral (P 0.05) included: being female 10 years of practice in the speciality agreeing all people with advanced cancer need referral, referral for the purpose of multidisciplinary management and having SPC services available.Conclusions : Specialists mainly refer people with advanced cancer for symptom-related reasons. Measures are needed to encourage ongoing needs-based assessments, especially of emotional, cultural and spiritual issues. Palliative Medicine 2008 : 51—57
Publisher: SAGE Publications
Date: 26-10-2016
Abstract: The Palliative Care Problem Severity Score is a clinician-rated tool to assess problem severity in four palliative care domains (pain, other symptoms, psychological/spiritual, family/carer problems) using a 4-point categorical scale (absent, mild, moderate, severe). To test the reliability and acceptability of the Palliative Care Problem Severity Score. Multi-centre, cross-sectional study involving pairs of clinicians independently rating problem severity using the tool. Clinicians from 10 Australian palliative care services: 9 inpatient units and 1 mixed inpatient/community-based service. A total of 102 clinicians participated, with almost 600 paired assessments completed for each domain, involving 420 patients. A total of 91% of paired assessments were undertaken within 2 h. Strength of agreement for three of the four domains was moderate: pain (Kappa = 0.42, 95% confidence interval = 0.36 to 0.49) psychological/spiritual (Kappa = 0.48, 95% confidence interval = 0.42 to 0.54) family/carer (Kappa = 0.45, 95% confidence interval = 0.40 to 0.52). Strength of agreement for the remaining domain (other symptoms) was fair (Kappa = 0.38, 95% confidence interval = 0.32 to 0.45). The Palliative Care Problem Severity Score is an acceptable measure, with moderate reliability across three domains. Variability in inter-rater reliability across sites and participant feedback indicate that ongoing education is required to ensure that clinicians understand the purpose of the tool and each of its domains. Raters familiar with the patient they were assessing found it easier to assign problem severity, but this did not improve inter-rater reliability.
Publisher: BMJ
Date: 03-2021
DOI: 10.1136/BMJOPEN-2020-042268
Abstract: Anticipation and prompt relief of symptoms among patients with a life-limiting illness is a core element of palliative care. Indigenous Australians commonly encounter cultural barriers in healthcare that may impair outcomes. The Palliative Care Outcomes Collaboration collects patient care data for the purposes of continuous quality improvement and benchmarking, with each recorded care episode ided into phases that reflect a patient’s condition. We aimed to investigate differences between Indigenous and non-Indigenous patients in the occurrence and duration of ‘unstable’ phases (which indicate unanticipated deterioration in a patient’s condition or circumstances), and determine attainment of the relevant benchmark (resolution of unstable phases in ≤3 days in 90% of cases) for both groups. Cohort study. Australia-wide hospital-based and community-based specialist palliative care (1 January 2010 to 30 June 2015). 139 556 (1502 Indigenous and 138 054 non-Indigenous) adult patients. Indigenous and non-Indigenous patients were compared on (1) the risk of a phase being categorised as unstable, (2) the duration of unstable phases, and (3) the risk of unstable phases being prolonged ( days). Crude and adjusted estimates were produced from three-level robust Poisson regression and complementary log-log discrete time survival models. Unstable phases occurred with similar frequency overall among Indigenous and non-Indigenous patients (adjusted relative risks 1.06 95% CI 1.00 to 1.11 not significant after correction for multiple comparisons). The duration and risk of prolongation of unstable phases were similar in both patient groups, with no significant differences evident among subgroups. The benchmark was not met for either Indigenous or non-Indigenous patients (unstable phase duration days in 24.3% vs 25.5% p=0.398). Despite well-documented shortcomings of healthcare for Indigenous Australians, there is no clear evidence of greater occurrence or prolongation of unanticipated problems among Indigenous patients accessing specialist palliative care services in hospital or the community.
Publisher: No publisher found
Date: 2013
DOI: 10.1200/JOP.2012.000690; PUBLISHED ONLINE AHEAD OF PRINT AT JOP.ASCOPUBS.ORG ON DECEMBER 4, 2012.
Publisher: Wiley
Date: 18-04-2018
DOI: 10.1002/PON.4435
Publisher: Springer Science and Business Media LLC
Date: 11-01-2010
Publisher: Elsevier BV
Date: 05-2016
DOI: 10.1016/J.JPAINSYMMAN.2015.12.311
Abstract: Breathlessness is a major cause of suffering and distress, and little is known about the trajectory of breathlessness near death. To determine the trajectory and clinical-demographic factors associated with breathlessness in the last week of life in patients receiving specialist palliative care. This was a prospective, longitudinal cohort study using national data on specialist palliative care from the Australian Palliative Care Outcomes Collaboration. We included patients in the Australian Palliative Care Outcomes Collaboration who died between July 1, 2013 and June 30, 2014 with at least one measurement of breathlessness on a 0-10 numerical rating scale in the week before death. The trajectory and factors associated with breathlessness were analyzed using multivariate random-effects linear regression. A total 12,778 patients from 87 services (33,404 data points) were analyzed. The average observed breathlessness was 2.1 points and remained constant over time. Thirty-five percent reported moderate to severe distress (numerical rating scale ≥4) at some time in their last week. Factors associated with higher breathlessness were younger age, male gender, cardiopulmonary involvement, concurrent fatigue, nausea, pain, sleeping problems, higher Australia-modified Karnofsky Performance Status, and clinical instability in the multivariate analysis. Respiratory failure showed the largest association (mean adjusted difference 3.1 points 95% confidence interval, 2.8-3.4). Although breathlessness has been reported to worsen in the last months, the mean severity remained stable in the final week of life. In specialized palliative care, one in three people experienced significant breathlessness especially in respiratory disease.
Publisher: Springer Science and Business Media LLC
Date: 06-10-2016
Publisher: SAGE Publications
Date: 27-03-2021
Abstract: Data quality is fundamental to the integrity of quantitative research. The role of external researchers in data quality assessment (DQA) remains ill-defined in the context of secondary use for research of large, centrally curated health datasets. In order to investigate equity of palliative care provided to Indigenous Australian patients, researchers accessed a now-historical version of a national palliative care dataset developed primarily for the purpose of continuous quality improvement. (i) To apply a generic DQA framework to the dataset and (ii) to report the process and results of this assessment and examine the consequences for conducting the research. The data were systematically examined for completeness, consistency and credibility. Data quality issues relevant to the Indigenous identifier and framing of research questions were of particular interest. The dataset comprised 477,518 records of 144,951 patients (Indigenous N = 1515 missing Indigenous identifier N = 4998) collected from participating specialist palliative care services during a period (1 January 2010–30 June 2015) in which data-checking systems underwent substantial upgrades. Progressive improvement in completeness of data over the study period was evident. The data were error-free with respect to many credibility and consistency checks, with anomalies detected reported to data managers. As the proportion of missing values remained substantial for some clinical care variables, multiple imputation procedures were used in subsequent analyses. In secondary use of large curated datasets, DQA by external researchers may both influence proposed analytical methods and contribute to improvement of data curation processes through feedback to data managers.
Publisher: Springer Science and Business Media LLC
Date: 12-2018
Publisher: CSIRO Publishing
Date: 2015
DOI: 10.1071/AH14118
Abstract: Objective To identify the attitudes, knowledge and practices regarding advance care planning (ACP) in palliative care. Methods A nationwide online survey was distributed to Australian palliative care services associated with the Palliative Care Outcomes Collaboration (n = 105). Seventy-three health professionals (HPs) and 59 service managers completed the survey. Results Regarding ACP, 51% of service managers reported relevant policies and procedures were in place in their service and 44% included ACP in job descriptions. Most HPs were confident in undertaking ACP, including initiating discussions with patients and complying with documents however, only 44% reported receiving ACP specific training. Although 58% of HPs reported having conversations about ACP with more than 11 patients in the past 6 months, only 44% of managers report that it is offered to most patients. Thirty per cent of HPs were aware of others not adhering to patient wishes in the past 6 months and only 43% of HPs (and 37% of managers) believed ACP is done well within their service. Conclusions This first national survey examining ACP in palliative care services demonstrates there is a need to improve systems to support ACP and to understand circumstances in which ACP wishes are not followed. What is known about the topic? ACP is increasingly recognised as an important part of care of people in hospital and community settings. However, currently there is no empirical evidence about the national uptake and quality of ACP in palliative care settings specifically. What does this paper add? This nationwide survey shows improvements on past small-scale research showing that ACP is supported by palliative care health professionals however, the organisational ACP processes and systems did not support best practice in this regard. What are the implications for practitioners? Palliative care organisations should incorporate ACP systems (including greater access to ACP policies and guidelines) that support health professionals to complete ACP with clients who want to. Greater access to support, such as ACP training and resources, would assist with development of ACP documentation and adherence.
Publisher: Springer Science and Business Media LLC
Date: 16-02-2011
DOI: 10.1007/S00520-010-0822-0
Abstract: People with advanced cancer who may benefit from specialised palliative care (SPC) do not necessarily access such services. To obtain a deeper understanding of issues affecting access to SPC, five focus groups were undertaken with nurses (35), physicians (three), allied health professionals (seven) and an academic involved in providing care. Thematic analysis revealed that palliative care providers consistently view palliative care as a broad holistic approach to care benchmarked on good symptom management. Whilst participants themselves perceived SPC as aiming to maximise the quality of life of the patient and family across all domains of care, they perceived that some health professionals and community members viewed palliative care largely as symptom control and terminal care for access after all disease-modifying treatment has been exhausted. Concern was expressed that such misconceptions were an important barrier to timely SPC. Participants did not nominate a time or particular milestone in the disease process which should prompt referral and suggested that SPC be available at any time where needs are complex and/or are not being met. Failure to properly recognise and understand the breadth of care provided within the palliative care framework may result in people with advanced cancer and their caregivers not accessing SPC services or accessing them too late to receive maximum benefit. Education may be required to promote the holistic nature of SPC services amongst health professionals and the community and to help realise the potential benefits to patients, families and health professionals resulting from timely access to SPC services.
Publisher: Wiley
Date: 28-06-2017
DOI: 10.1111/BLD.12191
Publisher: SAGE Publications
Date: 23-09-2015
Abstract: The concept of palliative care consisting of five distinct, clinically meaningful, phases (stable, unstable, deteriorating, terminal and bereavement) was developed in Australia about 20 years ago and is used routinely for communicating clinical status, care planning, quality improvement and funding. To test the reliability and acceptability of revised definitions of Palliative Care Phase. Multi-centre cross-sectional study involving pairs of clinicians independently rating patients according to revised definitions of Palliative Care Phase. Clinicians from 10 Australian palliative care services, including 9 inpatient units and 1 mixed inpatient/community-based service. A total of 102 nursing and medical clinicians participated, undertaking 595 paired assessments of 410 patients, of which 90.7% occurred within 2 h. Clinicians rated 54.8% of patients in the stable phase, 15.8% in the unstable phase, 20.8% in the deteriorating phase and 8.7% in the terminal phase. Overall agreement between clinicians’ rating of Palliative Care Phase was substantial (kappa = 0.67 95% confidence interval = 0.61–0.70). A moderate level of inter-rater reliability was apparent across all participating sites. The results indicated that Palliative Care Phase was an acceptable measure, with no significant difficulties assigning patients to a Palliative Care Phase and a good fit between assessment of phase and the definition of that phase. The most difficult phase to distinguish from other phases was the deteriorating phase. Policy makers, funders and clinicians can be confident that Palliative Care Phase is a reliable and acceptable measure that can be used for care planning, quality improvement and funding purposes.
Publisher: Wiley
Date: 12-2020
DOI: 10.1111/AJR.12686
Publisher: Hindawi Limited
Date: 03-06-2020
DOI: 10.1111/HSC.13027
Publisher: Oxford University Press (OUP)
Date: 21-04-2020
DOI: 10.1016/J.JSXM.2020.03.004
Abstract: Greater understanding of patient-reported barriers and facilitators to seeking and accessing sexual health services will help formulate strategies to assist gynecologic and breast cancer patients to overcome obstacles to accessing sexual health support because they typically do not seek sexual education and/or treatment when confronted with sexual concerns. The objectives of this systematic review were to (i) explore the patient-reported barriers to seeking and accessing support for sexual problems in gynecologic and breast cancer survivors, and (ii) identify strategies used to successfully overcome the barriers to accessing sexual health information and/or treatment. The main outcome measures included factors that prevent and/or facilitate gynecologic and breast cancer patients with sexual concerns seeking and accessing sexual health-related services. Systematic searches of major electronic databases (Ovid MEDLINE, PsycINFO, CINAHL, ProQuest, and Chinese database CNKI) from January 2009 to July 2019 were used to identify the barriers and facilitators to seeking sexual education/treatment from the perspective of gynecologic and breast cancer survivors. A narrative synthesis was conducted. 20 studies met the inclusion criteria including 12 qualitative, 6 quantitative, and 2 mixed methods studies. 4 interconnected themes were derived from 13 subthemes relating to the barriers/facilitators to seeking and accessing sexual health support. The most common barriers were embarrassment/discomfort in discussing sexual concerns, perceived discomfort of healthcare providers in discussing sexual issues, limitations of the healthcare system to address sexual problems, and the multidimensional nature of sexuality. Help-seeking for sexual health concerns was facilitated by: (i) oncology health professionals initiating and conducting open, honest discussions around sexual concerns with patients (ii) the availability of information in multiple forms and (iii) appropriate timing of information provision according to women's preferences. Oncology health professionals need to develop an open, honest, accepting communication style and be accessible to women with cancer and their partners within healthcare systems. The systematic review was conducted in accordance with guidelines. Variability in the primary aims and outcomes of the included studies precluded a meta-analysis. Training programs for providers of oncology care should enhance their knowledge of sexual issues in gynecologic and/or breast cancer, enhance their communication skills with patients, and improve their ability to consult or refer patients to psycho-oncologists or other mental health professionals.
Publisher: Elsevier BV
Date: 02-2017
DOI: 10.1016/J.APNR.2016.09.005
Abstract: To explore the: 1) prevalence of distress, type of problems experienced by haematological patients, and referrals for supportive care 2) effect of demographic and clinical variables on distress, and 3) effect on the time of health professionals conducting the screening in the ambulatory chemotherapy setting. Participants completed the National Comprehensive Cancer Network Distress Thermometer and Problem List and had a follow-up screening discussion with a health professional. Of 68 participants, 40% reported significant distress (≥4) on the Distress Thermometer (mean 3.2, SD 2.4). All patients reported physical problems and 72% reported emotional problems-the major contributors to distress and to time spent with the health professional. Distress was unrelated to age, gender or cancer type. Patients were less likely to have significant distress at the end of treatment than at the beginning (OR=0.15, 95% CI: 0.03 0.72,). Forty patients (59%) were referred to supportive services. The psychologist spent less time with patients compared to the nurse (18 vs 48min, p<0.001). The more emotional problems reported, the greater the time spent with the patient (r Nurses can appropriately screen for distress and address significant distress reported by haematology patients undergoing chemotherapy without over burdening the nurse or patient.
Publisher: CSIRO Publishing
Date: 2015
DOI: 10.1071/AH14119
Abstract: Objective To explore the health professionals’ (HPs) perceptions and experiences of advance care directives (ACDs) and advance care planning in Australian palliative care services. Methods A nationwide survey of 105 palliative care services was conducted, with two HPs from each service invited to participate. A qualitative analysis of open responses about advance care planning was undertaken. Results Sixty questionnaires were returned with open responses. Most responders were nurses (75%), aged ≥40 years (80%) and with a mean of 12 years palliative care experience. Data were grouped into four key themes: (1) the ACD (2) the process of developing ACDs (3) the process of using ACDs and (4) the consequences of having ACDs. Participants were positive about advance care planning, commenting that ongoing communication about end-of-life care ensures mutual understanding between patients, family and HPs. Provision of care was considered easier and more efficient with an ACD in place. ACDs were perceived to reduce distrust and conflict between family, friends and HPs, and promote communication. Suboptimal documentation, clarity and explicitness limited the usefulness of ACDs when they were available. Conclusions Advance care planning benefits HPs, patients and their family. To maximise these benefits, ACDs need to be clear, comprehensive, medically relevant and transportable documents. What is known about the topic? Ideally, advance care planning encompasses the identification and documentation of a person’s preferences for future medical treatments and care in preparation for an occasion when the person cannot express their values and wishes. The uptake and practice of advance care planning is inconsistent, and the extent to which it is used by health professionals and patients is variable. Many people are cared for at the end of life in specialist palliative care services, but the intersection between palliative care and advance care planning remains under-researched. What does this paper adds? ACDs facilitate communication and advance care planning help establish trust between health professionals, patients and their families and make multiple aspects of care easier for HPs. Processes surrounding ACDs, particularly inadequate documentation, limit adherence and application. What are the implications for practitioners? Clear communication is necessary for effective ACD development and application. The presence of an ACD makes communication and advance care planning easier, and improves trust between HPs, patients and their family. To be useful, ACDs must be clear, comprehensive, medically relevant, transportable documents.
Publisher: MDPI AG
Date: 30-04-2020
Abstract: Symptom relief is fundamental to palliative care. Aboriginal and Torres Strait Islander (Indigenous) Australians are known to experience inequities in health care delivery and outcomes, but large-scale studies of end-of-life symptoms in this population are lacking. We compared symptom-related distress among Indigenous and non-Indigenous Australian patients in specialist palliative care using the multi-jurisdictional Palliative Care Outcomes Collaboration dataset. Based on patient-reported rating scale responses, adjusted relative risks (aRRs) stratified by care setting were calculated for occurrence of (i) symptom-related moderate-to-severe distress and worsening distress during a first episode of care and (ii) symptom-related moderate-to-severe distress at the final pre-death assessment. The p-value significance threshold was corrected for multiple comparisons. First-episode frequencies of symptom-related distress were similar among Indigenous (n = 1180) and non-Indigenous (n = 107,952) patients in both inpatient and community settings. In final pre-death assessments (681 Indigenous and 67,339 non-Indigenous patients), both groups had similar occurrence of moderate-to-severe distress when care was provided in hospital. In community settings, Indigenous compared with non-Indigenous patients had lower pre-death risks of moderate-to-severe distress from overall symptom occurrence (aRR 0.78 p = 0.001 confidence interval [CI] 0.67–0.91). These findings provide reassurance of reasonable equivalence of end-of-life outcomes for Indigenous patients who have been accepted for specialist palliative care.
Publisher: BMJ
Date: 05-03-2016
DOI: 10.1136/BMJSPCARE-2014-000748
Abstract: In Australia, patients at the end of life with complex symptoms and needs are often referred to palliative care services (PCSs), but little is known about the symptoms of patients receiving palliative care in different settings. To explore patients' levels of pain and other symptoms while receiving care from PCSs. PCSs registered through Australia's national Palliative Care Outcomes Collaboration (PCOC) were invited to participate in a survey between 2008 and 2011. Patients (or if unable, a proxy) were invited to complete the Palliative Care Outcome Scale. Questionnaires were completed for 1800 patients. One-quarter of participants reported severe pain, 20% reported severe 'other symptoms', 20% reported severe patient anxiety, 45% reported severe family anxiety, 66% experienced depressed feelings and 19% reported severe problems with self-worth. Participants receiving care in major cities reported higher levels of depressed feelings than participants in inner regional areas. Participants receiving care in community and combined service settings reported higher levels of need for information, more concerns about wasted time, and lower levels of family anxiety and depressed feelings when compared to inpatients. Participants in community settings had lower levels of concern about practical matters than inpatients. Patients receiving care from Australian PCSs have physical and psychosocial concerns that are often complex and rated as 'severe'. Our findings highlight the importance of routine, comprehensive assessment of patients' concerns and the need for Specialist Palliative Care clinicians to be vigilant in addressing pain and other symptoms in a timely, systematic and holistic manner, whatever the care setting.
Publisher: Hindawi Limited
Date: 16-09-2021
DOI: 10.1111/HSC.13570
Abstract: There are potential benefits associated with advance care planning (ACP), and general practitioners (GPs) are well placed to coordinate ACP initiatives with their patients. Few studies have reported on the uptake of different forms of advance care plan conducted by GPs and how this affects patients' place of death. The primary aims of the study were to examine uptake of verbal (conversations regarding care preferences) and written (documented care preferences) advance care plans and their associated factors from the perspective of Australian GPs. The secondary aim was to determine the impact of different types of advance care plans on place of death. Sixty-one GPs from three Australian states used a validated clinic-based data collection process to report on care provided for decedents in the last year of life, including provision of services, place of death, and uptake of ACP. We found that 58 (27.9%), 91 (43.7%) and 59 (28.4%) reported decedents had no advance care plans, verbal plans or written plans, respectively. There were increased uptake of both verbal plans (relative risk ratio [RRR] = 13.10, 95% confidence interval [CI]: 2.18-77.34) and written plans (RRR = 10.61, 95% CI: 1.72-65.57) if GPs foresaw the death for >90 days versus <7 days. Palliative care training history for GPs predicted uptake of verbal plans (RRR = 5.83, 95% CI: 1.46-31.93). Patients with verbal plans versus no plans were more likely to die at a private residence (odds ratio = 4.97, 95% CI: 1.32-18.63). Our findings suggest that expectation of death for at least three months prior to the event (where clinically possible) and palliative care training for GPs improve the uptake of ACP in general practice. Larger pragmatic trials are required to determine the impact of ACP on patients' place of death.
Publisher: BMJ
Date: 17-02-2020
DOI: 10.1136/BMJSPCARE-2019-002006
Abstract: There are no processes that routinely assess end-of-life care in Australian general practice. This study aimed to develop a data collection process which could collect observational data on end-of-life care from Australian general practitioners (GPs) via a questionnaire and clinical data from general practice software. The data collection process was developed based on a modified Delphi study, then pilot tested with GPs through online surveys across three Australian states and data extraction from general practice software, and finally evaluated through participant interviews. The developed data collection process consisted of three questionnaires: Basic Practice Descriptors (32 items), Clinical Data Query (32 items) and GP-completed Questionnaire (21 items). Data extraction from general practice software was performed for 97 decedents of 10 GPs and gathered data on prescriptions, investigations and referral patterns. Reports on care of 272 decedents were provided by 63 GPs. The GP-completed Questionnaire achieved a satisfactory level of validity and reliability. Our interviews with 23 participating GPs demonstrated the feasibility and acceptability of this data collection process in Australian general practice. The data collection process developed and tested in this study is feasible and acceptable for Australian GPs, and comprehensively covers the major components of end-of-life care. Future studies could develop an automated data extraction tool to reduce the time and recall burden for GPs. These findings will help build a nationwide integrated information network for primary end-of-life care in Australia.
Publisher: OMICS Publishing Group
Date: 30-06-2010
DOI: 10.4066/AMJ.2010.329
Publisher: Cambridge University Press (CUP)
Date: 04-05-2011
DOI: 10.1017/S1478951511000058
Abstract: Late or non-referral of patients to specialist palliative care (SPC) services may affect patients' and their carers' quality of care. General practitioners (GPs) are key professionals in linking people with SPC. The aim of this article is to assess GPs' perceptions and SPC referrals for their patients with advanced cancer and differences between metropolitan (M GPs) and non-metropolitan GPs (NM GPs). Self-report survey mailed to a stratified random s le of 1,680 Australian GPs was used. Thirty-one percent (469) of eligible GPs returned surveys. More M GPs than NM GPs reported referring % of their patients for SPC ( p = 0.014) and that a more comprehensive range of SPC services was available. The most frequently reported referral prompts were: presence of terminal illness (M GPs, 71%, NM GPs, 66%, ns (not significant)) future need for symptom control (69% vs . 59%, ns ) and uncontrolled physical symptoms (63% vs . 54%, ns ). Reasons for not referring were: doctor's ability to manage symptoms (62% vs . 68%, ns ) and the absence of symptoms (29% vs . 18%, p = 0.025). Higher referral was associated with: having a palliative care physician or consultative service available agreeing that all patients with advanced cancer should be referred, and agreeing that with SPC, the needs of the family are better met. Referrals for SPC were primarily disease-related rather than for psychological and emotional concerns. Measures are needed to encourage referrals based upon psychosocial needs as well as for physical concerns, and to support GPs caring for people with advanced cancer in areas with fewer comprehensive SPC services.
Publisher: Springer Science and Business Media LLC
Date: 28-01-2016
Publisher: American Society of Clinical Oncology (ASCO)
Date: 09-2015
Abstract: Little benefit was seen for a shared care model in the majority of domains including empowerment, symptom prevalence, and psychological adjustment to cancer. The shared care model showed efficacy in clinically anxious patients.
Publisher: Wiley
Date: 02-2015
DOI: 10.5694/MJA14.00768
Abstract: To develop a peer-review model for assessment and quality improvement of cancer multidisciplinary teams (MDTs) and qualitatively assess its feasibility and acceptability in Australia. A peer-review methodology was developed, based on the United Kingdom's National Health Service peer-review model and a comprehensive literature review. This was pilot tested in three mature MDTs in different settings. Semi-structured interviews were conducted between December 2012 and July 2013 with all five peer reviewers and 17 MDT members. Thematic analysis was undertaken using a framework approach. Peer reviewers and MDT members found the process reasonable, constructive and useful however, those involved in the preparation for the review found it time-consuming. Most MDT members considered the final report accurate and reflective of their service. Recommendations in the report were met with mixed reactions: several MDT members perceived some recommendations to be particularly relevant, while others viewed the same recommendations as impractical or of limited value. Many participants were unsure if recommendations would be fully implemented. The majority saw value in the process and expressed support for its implementation locally and nationally however, feedback suggests the most appropriate format is yet to be established. Peer review of cancer MDTs is feasible and acceptable. We describe valuable lessons learnt and recognise that further development of the proposed peer-review model and national benchmarking of MDTs against established outcome measures is required if this process is to be widely implemented.
Publisher: Hindawi Limited
Date: 02-08-2022
DOI: 10.1111/HSC.13931
Publisher: Wiley
Date: 07-2017
DOI: 10.1111/IMJ.13454
Abstract: Advance cardiopulmonary resuscitation (CPR) discussions and decision-making are not routine clinical practice in the hospital setting. Frail older patients may be at risk of non-beneficial CPR. To assess the utility and safety of two interventions to increase CPR decision-making, documentation and communication for hospitalised older patients. A pre-post study tested two interventions: (i) standard ward-based education forums with CPR content and (ii) a combined, two-pronged strategy with 'Goals of Patient Care' (GoPC) system change and a structured video-based workshop against usual practice (i.e. no formal training). Participants were a random s le of patients in a hospital rehabilitation unit. The outcomes were the proportion of patients documented as: (i) not for resuscitation (NFR) and (ii) eligible for rapid response team (RRT) calls, and rates of documented discussions with the patient, family and carer. When compared with usual practice, patients were more likely to be documented as NFR following the two-pronged intervention (adjusted odds ratio (aOR): 6.4, 95% confidence interval (CI): 3.0 13.6). Documentation of discussions with patients was also more likely (aOR: 3.3, 95% CI:1.8 6.2). Characteristics of patients documented NFR were similar between the phases, but were more likely for RRT calls following Phase 3 (P 0.03). An increase in advance CPR decisions occurred following GoPC system change with education. This appears safe as NFR patients had the same level of frailty between phases but were more likely to be eligible for RRT review. Increased documentation of discussions suggests routine use of the GoPC form may improve communication with patients about their care.
Publisher: International Scientific Information, Inc.
Date: 29-01-2018
DOI: 10.12659/MSM.906052
Abstract: BACKGROUND Endobronchial ultrasound-guided transbronchial needle aspiration (EBUS-TBNA) and guide sheath (EBUS-GS) are gaining popularity for diagnosis and staging of lung cancer compared to CT-guided transthoracic needle aspiration (CT-TTNA), blind fiber-optic bronchoscopy, and mediastinoscopy. This paper aimed to examine predictors of higher costs for diagnosing and staging lung cancer, and to assess the effect of EBUS techniques on hospital cost. MATERIAL AND METHODS Hospital costs for diagnosis and staging of new primary lung cancer patients presenting in 2007-2008 and 2010-2011 were reviewed retrospectively. Multiple linear regression was used to determine relationships with hospital cost. RESULTS We reviewed 560 lung cancer patient records 100 EBUS procedures were performed on 90 patients. Higher hospital costs were associated with: EBUS-TBNA performed (p<0.0001) increasing inpatient length of stay (p<0.0001) increasing number of other surgical/diagnostic procedures (p<0.0001) whether the date of management decision fell within an inpatient visit (p<0.0001) and if the patient did not have a CT-TTNA, then costs increased as the number of imaging events increased (interaction p<0.0001). Cohort was not significantly related to cost. Location of the procedure (outside vs. inside theater) was a predictor of lower one-day EBUS costs (p<0.0001). Cost modelling revealed potential cost saving of $1506 per EBUS patient if all EBUS procedures were performed outside rather than in the theater ($66,259 per annum). CONCLUSIONS EBUS-TBNA only was an independent predictor of higher cost for diagnosis and staging of lung cancer. Performing EBUS outside compared to in the theater may lower costs for one-day procedures potential future savings are considerable if more EBUS procedures could be performed outside the operating theater.
Publisher: Wiley
Date: 12-07-2022
DOI: 10.1111/JAN.14966
Abstract: Hyperactive delirium (HD) is a common and distressing symptom among palliative care patients. This study aimed to describe the characteristics of HD and associated symptoms among palliative care inpatients and evaluate relationships between HD development and symptom trajectories in this population. A retrospective study was conducted. A retrospective review of medical records was conducted for all patients who died in a large Australian specialist palliative care unit between 1 January and 31 December 2019. Patients were assessed daily using the Symptoms Assessment Scale (SAS) and Palliative Care Problem Severity Scale (PCPSS). Multilevel models were used to estimate the differences in symptoms trajectories in the last 7 days of life between the two groups. Of the 501 included patients, 64.5% (323) had an episode of HD. For 30% (95) of patients, HD occurred prior to admission. Compared with patients without HD, those with HD had significantly higher odds ratios (ORs) for four of the seven SAS symptoms (sleep problems, appetite, fatigue and pain OR range: 1.94-4.48, p < .05), and all four PCPSS items (OR range: 2.00-3.00, p < .05) in the last week of life. Palliative care inpatients commonly experience HD in their last week of life. There are higher levels of symptom distress, complexity, psychological concerns and family/carer concerns among patients with HD compared with those without HD. The high prevalence of HD, and its association with higher levels of symptom distress, highlights the importance of routine screening and optimal management for HD among palliative care patients. Given the widely recognized challenges facing palliative care professionals in assessment and management of delirium, provision of relevant training among these professionals is recommended.
Publisher: Springer Science and Business Media LLC
Date: 27-07-2015
Publisher: Wiley
Date: 05-2017
DOI: 10.1111/IMJ.13374
Abstract: There is no mechanism in place for monitoring or quality improvement of cancer multidisciplinary meetings (MDM) in Australia. To develop a peer-review process for quality improvement of MDM. This project involved three phases: (i) development of a draft peer-review framework, supporting documents and peer-review process (ii) consultation with key stakeholders (iii) refinement of the framework, documents and processes following a pilot study with three MDM. Feedback indicated that specific standards included in the framework needed to allow the peer reviewers to be flexible relative to the circumstances of the in idual MDM. Conversely, feedback identified the need for clear, evidence-based clinical practice guidelines for the conduct of MDM, with accepted standards and objective measures of performance. MDM members were ided about the need to employ peer reviewers from the tumour stream of the MDM under review but agreed that closer involvement of the team under review to support the implementation of recommendations is warranted. We developed an adaptable peer-review framework and process using the current available evidence and guidance. While further research is needed to establish what constitutes best practice in MDM and which processes contribute to improved patient outcomes, the structured peer-review process we describe, when modified using the disease-relevant evidence, could be utilised more broadly as a quality improvement tool.
Publisher: Springer Science and Business Media LLC
Date: 09-10-2020
Publisher: Springer Science and Business Media LLC
Date: 24-03-2015
DOI: 10.1007/S00520-015-2697-6
Abstract: This study evaluates a pilot implementation of the Liverpool Care Pathway (LCP), a clinical tool used to guide the care of dying patients in the last days of life, on the end-of-life care for dying patients in three regions in rural Australia. The LCP was implemented at 13 participating sites: nine hospitals (general wards), one community-based palliative care service, and three in-hospital palliative care units. To evaluate the implementation of the LCP, 415 eligible patient records were examined: 223 pre-implementation and 192 post-implementation (116 on the LCP and 76 receiving usual care). The primary analysis compared all patients pre-implementation of the LCP versus all patients post-implementation. Increases were found post-implementation for communication with other health professionals and with patients or family (pre-69 %, post-87 % p ≤ 0.000), use of palliative medications (pre-87 %, post-98 % p ≤ 0.000) and frequency of symptom assessments (pre-66 %, post-82 % p ≤ 0.000). Fewer blood and radiological investigations were conducted and venous access devices used in the post-implementation groups than in the pre-implementation period. This study suggests that when rigorously implemented, the LCP improves important components of end-of-life care for dying patients and their families.
Publisher: BMJ
Date: 27-07-2020
DOI: 10.1136/BMJSPCARE-2019-002114
Abstract: General practitioners (GPs) and general practice nurses (GPNs) face increasing demands to provide palliative care (PC) or end-of-life care (EoLC) as the population ages. In order to maximise the impact of GPs and GPNs, the impact of different models of care that have been developed to support their practice of EoLC needs to be understood. To examine published models of EoLC that incorporate or support GP and GPN practice, and their impact on patients, families and the health system. Systematic literature review. Data included papers (2000 to 2017) sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases. From 6209 journal articles, 13 papers reported models of care supporting the GP and GPN’s role in EoLC or PC practice. Services and guidelines for clinical issues have mixed impact on improving symptoms, but improved adherence to clinical guidelines. National Frameworks facilitated patients being able to die in their preferred place. A single specialist PC-GP case conference reduced hospitalisations, better maintained functional capacity and improved quality of life parameters in both patients with cancer and without cancer. No studies examined models of care aimed at supporting GPNs. Primary care practitioners have a natural role to play in EoLC, and most patient and health system outcomes are substantially improved with their involvement. Successful integrative models need to be tested, particularly in non-malignant diseases. Such models need to be explored further. More work is required on the role of GPNs and how to support them in this role.
Publisher: Springer Science and Business Media LLC
Date: 09-02-2014
DOI: 10.1007/S13187-014-0625-Y
Abstract: Inadequate knowledge about research processes within cancer health services has the potential to limit the development of evidence-based care. A survey was emailed to 201 health professionals working in cancer services in a major city to identify perceived levels of research knowledge and barriers to conducting research. Eighty-five people (42%) responded. Barriers to conducting research included time-constraints (84%), workload (72%), limited research funding (74%) and limited knowledge (34%). Gaps in research knowledge included performing quantitative analyses (79%), gaining funds (71%), using qualitative and quantitative research methods (62 and 67%) and formulating a research proposal (54%). More nurses reported having gaps in research knowledge than other professions. Two thirds (66%) of participants reported an interest in further education. There is a need for research training for practising health professionals and a focus on research as the basis for providing evidence-based care in undergraduate courses. Research, translation of research into practice and evidence-based care need to be incorporated into health professional roles throughout their careers.
Publisher: Public Library of Science (PLoS)
Date: 02-05-2019
Publisher: Wiley
Date: 25-02-2012
DOI: 10.1002/PON.1933
Abstract: To assess the impact of the systematic use of the Palliative Care Needs Assessment Guidelines and Needs Assessment Tool: Progressive Disease-Cancer (NAT: PD-C) on clinical assessment, response and service utilisation. Three major oncology treatment centres in NSW, Australia. Between March 2007 and December 2009, 219 people with advanced cancer were recruited to complete bi-monthly telephone interviews. The intervention, introduced after at least two baseline interviews, involved training health professionals to complete the NAT: PD-C with patients approximately monthly. Rates of service use and referrals were compared pre- and post-introduction of the NAT: PD-C. Rates of completion of the tool its impact on consultation length and the types of needs and follow-up care to address these were also assessed. The NAT: PD-C had a high rate of completion identified needs consistent with those self-reported by patients in interviews and did not alter consultation length. No changes in the number of health professionals seen by patients were found pre- and post-intervention. The NAT: PD-C is an efficient and acceptable strategy for supporting needs-based cancer care that can potentially be incorporated into standard routine care without increasing the burden on care providers.
Publisher: Mary Ann Liebert Inc
Date: 04-2011
Abstract: Doctors in Australia play an important role in facilitating access to specialist palliative care (SPC) services for people with advanced cancer. This study aimed to describe doctors' perceptions of barriers to referring patients for SPC, and to identify triggers and facilitators for referral. Forty semistructured telephone interviews were conducted with doctors involved in the care of people with advanced cancer from a variety of settings. Six themes were identified: disease and treatment psychosocial communication and interpersonal issues health services issues timing and, health professionals' skills. All doctors considered the presence and complexity of physical symptoms, stage of the disease and treatment orientation as important in decisions to refer for SPC. Less important were the psychosocial well-being and cultural characteristics of the person with cancer and their family. Factors reportedly affecting referral and access included health professionals' ability to communicate openly and honestly about disease progression, availability and location of SPC resources and doctors' expertise. Divergent views were expressed about appropriate timing for access. The predominant view that SPC is for management of physical symptoms may result in nonreferral of those who have complex problems without physical symptoms. Given the complex relationship between psychological and physical well-being and health-related quality of life, it is important that all factors contributing to patient well-being are identified. Routine use of objective measures of unmet and complex needs may help identify people who are likely to most benefit from SPC and optimize access, regardless of timing, stage of disease, and treatment orientation.
No related grants have been discovered for Claire Johnson.