ORCID Profile
0000-0003-4170-9799
Current Organisations
University of Melbourne
,
Peter MacCallum Cancer Centre
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Publisher: Wiley
Date: 21-04-2016
DOI: 10.1002/JMRS.171
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 02-1999
Publisher: Springer Science and Business Media LLC
Date: 2013
Publisher: Mark Allen Group
Date: 09-2001
DOI: 10.12968/IJPN.2001.7.9.9301
Abstract: Problems associated with conducting randomized controlled trials (RCTs) in palliative care are well documented. Palliative care researchers commonly report difficulties with recruitment, attrition, and randomization. Despite these difficulties, there is a crucial need to enhance the evidence base of palliative care and RCTs are a recognized method for achieving this. Few publications to date have provided clear strategies for researchers considering RCTs in palliative care. This article presents an overview of the features of the RCT and reasons for using this research method. Problems with conducting RCTs are considered with discussion focusing on an approach for managing these hurdles. Ex les are provided from an ongoing RCT investigating a support and information programme for lay caregivers of people receiving palliative care at home. The aim of the article is to provide a guide to conducting RCTs and to promote their use in palliative care when researchers are evaluating new interventions.
Publisher: Elsevier BV
Date: 2012
Abstract: High levels of distress and need for self-care information by patients commencing chemotherapy suggest that current prechemotherapy education is suboptimal. We conducted a randomised, controlled trial of a prechemotherapy education intervention (ChemoEd) to assess impact on patient distress, treatment-related concerns, and the prevalence and severity of and bother caused by six chemotherapy side-effects. One hundred and ninety-two breast, gastrointestinal, and haematologic cancer patients were recruited before the trial closing prematurely (original target 352). ChemoEd patients received a DVD, question-prompt list, self-care information, an education consultation≥24 h before first treatment (intervention 1), telephone follow-up 48 h after first treatment (intervention 2), and a face-to-face review immediately before second treatment (intervention 3). Patient outcomes were measured at baseline (T1: pre-education) and immediately preceding treatment cycles 1 (T2) and 3 (T3). ChemoEd did not significantly reduce patient distress. However, a significant decrease in sensory sychological (P=0.027) and procedural (P=0.03) concerns, as well as prevalence and severity of and bother due to vomiting (all P=0.001), were observed at T3. In addition, subgroup analysis of patients with elevated distress at T1 indicated a significant decrease (P=0.035) at T2 but not at T3 (P=0.055) in ChemoEd patients. ChemoEd holds promise to improve patient treatment-related concerns and some physical sychological outcomes however, further research is required on more erse patient populations to ensure generalisability.
Publisher: Elsevier BV
Date: 10-2005
DOI: 10.1016/J.JPAINSYMMAN.2005.04.006
Abstract: This study describes an evaluation of a psycho-educational intervention for family caregivers of patients dying of cancer at home. In a randomized controlled trial, participants (n = 106) received standard home-based palliative care services (n = 52) or these services plus the new intervention (n = 54). Data were collected at three time points: upon commencement of home-based palliative care (Time 1), five weeks later (Time 2), and then eight weeks following patient death (Time 3). No intervention effects were identified with respect to preparedness to care, self-efficacy, competence, and anxiety. However, participants who received the intervention reported a significantly more positive caregiver experience than those who received standard care at both Times 2 and 3. The findings indicate that it is possible to increase caregiver rewards despite being immersed in challenging circumstances that often yield considerable negative psychosocial sequelae. Furthermore, it is feasible for health professionals to discuss emotive topics, such as impending death, with caregivers without adverse effects.
Publisher: Springer Science and Business Media LLC
Date: 30-05-2007
DOI: 10.1007/S00520-007-0273-4
Abstract: Based on meta-analyses regarding the preparation of patients for potentially threatening medical procedures, a DVD, incorporating behavioral role modelling, was developed to prepare patients for chemotherapy and assist them to self-manage side effects. It was hypothesized that patients who watched the DVD (vs those who did not) would report (1) lower anxiety (2) higher self-efficacy related to coping with treatment side effects (3) fewer supportive care needs and (4) higher satisfaction with information received. It was further hypothesized that these effects would be stronger in those perceiving their treatment intent to be curative rather than palliative. Quasi-experimental design using a historical control group was employed. Participants were scheduled to receive their first ever chemotherapy treatment. Group 1 (usual care n = 50) was prospectively recruited before the release of the DVD and group 2 (DVD plus usual care n = 50) after the release. Before commencing chemotherapy, all patients completed reliable and valid measures of self-efficacy, anxiety, and supportive care needs. Data was stratified according to perceived treatment intent. Independent s le t tests were performed for each group (curative vs palliative). Significant differences were found between the usual care and intervention groups: for self-perceived curative patients in relation to self-efficacy for seeking social support (p = 0.044), with increased confidence in those watching the DVD, and for self-perceived palliative patients in relation to their satisfaction with information about side effects (p = 0.026), with increased satisfaction in those watching the DVD. Overall, significant differences were found between self-perceived curative vs palliative patients on measures of self-efficacy and supportive care needs, with self-perceived curative patients reporting more confidence and fewer needs. The educational DVD was considered highly acceptable by patients and was found to increase self-efficacy and reduce supportive care needs. Hence, it is appropriate to give to patients before face-to-face chemotherapy education. Additional pretreatment education is recommended, particularly for self-perceived palliative patients, to reduce their pretreatment anxiety and enhance their confidence in coping with treatment.
Publisher: Hindawi Limited
Date: 14-10-2009
DOI: 10.1111/J.1365-2354.2009.01109.X
Abstract: To examine the type of published research regarding quality of life for cancer patients over two 24-month periods: 1995-1996 and 2005-2006. A computer-based literature search was conducted using Medline. Two random s les of 120 publications identified in 1995-1996 and in 2005-2006 were coded as data-based research, reviews or programme descriptions. Data-based publications were further coded as measurement, descriptive or intervention research. Intervention publications were coded as psychosocial- or biomedical-based. Psychosocial intervention papers were coded using Cochrane Review criteria. In 1995-1996, 419 publications were identified and 1271 publications in 2005-2006. The majority of publications were data-based. The proportion of types of publications (data-based, reviews or programme description/case report categories) did not change significantly over time. Descriptive research dominated data-based publication outputs in 1995-1996 and 2005-2006. The current approach to quality of life research for cancer patients may be less than optimal for providing successful development of knowledge, improving healthcare delivery and lessening the burden of suffering.
Publisher: Springer Science and Business Media LLC
Date: 25-01-2008
DOI: 10.1007/S11764-008-0043-4
Abstract: The number of cancer survivors is increasing dramatically. Many survivors report long-term psychosocial, physical and other consequences. To understand the issues faced by Australian cancer survivors we conducted focus groups with cancer patients and health professionals. Patients were identified through a peer support program at a major cancer treatment center (Peter Mac). Health professionals were also recruited from Peter Mac. Focus groups followed a semi-structured format based on themes identified from the literature. Questions focused on treatment completion, and 1 year post-treatment. Participants were also asked to suggest solutions to address identified issues. Focus groups were taped, transcribed, cross-checked for accuracy, and analyzed independently. The most common needs (in terms of both frequency and intensity) reported at treatment completion by both survivors and professionals were dealing with fatigue, anxiety about cancer recurrence, others expecting you to be back to normal, having to create new expectations about physical ability, and anxiety about leaving the hospital system. The most common needs at 1 year were anxiety about check-ups and results, and going into early menopause. The most frequently suggested ways of meeting these perceived needs were reassuring survivors the way they feel is normal and putting them in contact with others who have been through the same experience. There was a high level of congruence in the themes identified by survivors and health professionals. These results provide a clear direction for the development of resources to support cancer survivors following treatment completion.
Publisher: Hindawi Limited
Date: 14-10-2009
DOI: 10.1111/J.1365-2354.2009.01158.X
Abstract: As a result of more people living with or surviving cancer, outputs for quality of life research may have increased over time to reflect the needs of the growing number of people affected by cancer. To determine if this is the case, the authors sought to examine the number and proportion of publications concerned with cancer patients' quality of life for four major cancer sites (breast, lung, prostate, colorectal) over five equal time periods (1985, 1990, 1995, 2000, 2005). A computer-based literature search using Medline and PsycINFO databases was undertaken. A comparison search with cancer-related biomedical terms was conducted. The results showed that the number of quality of life publications was substantially lower compared with biomedical publications over time, although the average annual relative increase in publications was greatest for quality of life. The total number of quality of life publications was greatest for breast cancer and lowest for colorectal cancer at all five time points. The relative increase over time of quality of life publications was greatest for prostate cancer and lowest for breast cancer. More research is needed regarding quality of life for cancer patients. Breast cancer has dominated quality of life research outputs despite a lower relative increase in publications over time compared with other cancer sites. There is need for debate among funding agencies and researchers to ensure research efforts are shared among cancer types.
Publisher: Mark Allen Group
Date: 03-2005
DOI: 10.12968/IJPN.2005.11.3.18026
Abstract: Sanchia Aranda reflects on the strange nature of the term ‘specialist’ in relation to palliative nursing.
Publisher: MDPI AG
Date: 02-03-2021
Abstract: (1) Background: This systematic review was conducted to identify cancer patient experiences, and the impact of out-of-pocket costs and financial burden in Australia. (2) Methods: A systematic review, following the Preferring Reporting Items for Systematic Reviews and Meta-Analyses, was conducted. Cumulative Index of Nursing and Allied Health Literature and PubMed were searched. The primary outcome was financial burden among cancer patients and their families in Australia. The secondary outcome was out-of-pocket costs associated with cancer care and treatment within the population s le, and the impact of financial burden. (3) Results: Nineteen studies were included, covering more than 70,000 Australians affected by cancer. Out-of-pocket costs varied by cancer type and ranged from an average of AUD 977 for breast cancer and lymphoedema patients to AUD 11,077 for prostate cancer patients. Younger aged patients (≤65 years), Aboriginal and Torres Strait Islander people, people in rural and/or remote areas, households with low income, those who were unemployed and people with private health insurance were at increased risk of experiencing out-of-pocket costs, financial burden or a combination of both. (4) Conclusions: Australians diagnosed with cancer frequently experience financial burden, and the health and financial consequences are significant. Focusing efforts on the costs of care and options about where to have care within the context of informed decisions about cancer care is necessary.
Publisher: Wiley
Date: 04-06-2013
DOI: 10.1002/PON.3306
Abstract: People with inoperable lung cancer experience higher levels of distress, more unmet needs and symptoms than other cancer patients. There is an urgent need to test innovative approaches to improve psychosocial and symptom outcomes in this group. This study tested the hypothesis that a tailored, multidisciplinary supportive care programme based on systematic needs assessment would reduce perceived unmet needs and distress and improve quality of life. A randomised controlled trial design was used. The tailored intervention comprised two sessions at treatment commencement and completion. Sessions included a self-completed needs assessment, active listening, self-care education and communication of unmet psychosocial and symptom needs to the multidisciplinary team for management and referral. Outcomes were assessed with the Needs Assessment for Advanced Lung Cancer Patients, Hospital Anxiety and Depression Scale, Distress Thermometer and European Organization of Research and Treatment of Cancer Quality of Life Q-C30 V2.0. One hundred and eight patients with a diagnosis of inoperable lung or pleural cancer (including mesothelioma) were recruited from a specialist facility before the trial closed prematurely (original target 200). None of the primary contrasts of interest were significant (all p > 0.10), although change score analysis indicated a relative benefit from the intervention for unmet symptom needs at 8 and 12 weeks post-assessment (effect size = 0.55 and 0.40, respectively). Although a novel approach, the hypothesis that the intervention would benefit perceived unmet needs, psychological morbidity, distress and health-related quality of life was not supported overall.
Publisher: BMJ
Date: 06-2018
Publisher: Hindawi Limited
Date: 13-07-2020
DOI: 10.1111/ECC.13284
Publisher: Springer Science and Business Media LLC
Date: 19-10-2015
Publisher: American Society of Clinical Oncology (ASCO)
Date: 09-2005
Abstract: To evaluate the efficacy of a psychoeducational intervention in improving cancer-related fatigue. This randomized controlled trial involved 109 women commencing adjuvant chemotherapy for stage I or II breast cancer in five chemotherapy treatment centers. Intervention group patients received an in idualized fatigue education and support program delivered in the clinic and by phone over three 10- to 20-minute sessions 1 week apart. Instruments included a numeric rating scale assessing confidence with managing fatigue 11-point numeric rating scales measuring fatigue at worst, average, and best the Functional Assessment of Cancer Therapy–Fatigue and Piper Fatigue Scales the Cancer Self-Efficacy Scale the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C30 and the Hospital Anxiety and Depression Scale. For each outcome, separate analyses of covariance of change scores between baseline (T1) and the three follow-up time points (T2, T3, and T4) were conducted, controlling for the variable's corresponding baseline value. Compared with the intervention group, mean difference scores between the baseline (T1) and immediate after the test (T2) assessments increased significantly more for the control group for worst and average fatigue, Functional Assessment of Cancer Therapy–Fatigue, and Piper fatigue severity and interference measures. These differences were not observed between baseline and T3 and T4 assessments. No significant differences were identified for any pre- or post-test change scores for confidence with managing fatigue, cancer self-efficacy, anxiety, depression, or quality of life. Preparatory education and support has the potential to assist women to cope with cancer-related fatigue in the short term. However, further research is needed to identify ways to improve the potency and sustainability of psychoeducational interventions for managing cancer-related fatigue.
Publisher: Hindawi Limited
Date: 05-2005
DOI: 10.1111/J.1365-2354.2005.00520.X
Abstract: This article reports on a study exploring the challenges and complexities of caring for a child with cancer no longer responding to curative therapy. The difficulties that health professionals face when initiating and providing palliative care to children with cancer is largely unexplored. A greater understanding of these challenges is needed to inform the development of effective models of care. Participatory group discussions and in-depth interviews were used to explore how health professionals from three disciplines - nursing, medicine and social work - view their role during the shift from cure to palliation. Interviews were tape-recorded and transcribed verbatim. Content and thematic analysis was used to identify themes and important messages in the transcripts. This study illustrates how the trajectory of childhood cancer is characterized by uncertainty, especially following relapse where there is reduced clarity surrounding the child's outcome. Prognostic uncertainty and continued hope for survival make the shift to palliation difficult, raising questions about the applicability of traditional palliative care models for these children and their families. Decision making in this context is complicated by a lack of clarity, uncertainty and continued hope. Shifting the focus of care from cure to palliation is not experienced as a discrete event but rather, as an awareness and acceptance that slowly develops. New models of care that incorporate palliative care throughout the disease trajectory are recommended.
Publisher: SAGE Publications
Date: 29-10-2012
Abstract: The role of the internet, and in particular e-health, in chronic illness is a burgeoning phenomenon but its use to date in cancer care is somewhat limited. In this study an iterative consultative process was undertaken with the aim to develop a cancer care website that was patient-led, facilitated cancer self-management and had the potential to improve communication between patients, family and friends and health care professionals. The process involved multiple demonstrations of an already established base platform (SeeCare © ) to potential end users (patients, family members and friends and health professionals) to identify required functions of a cancer care specific platform. An exhaustive list of specifications was prioritised and operationalised resulting in a web platform for people affected by cancer that was ready for testing in the clinical setting: CanCare.
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: 07-2017
DOI: 10.1002/IJGO.12182
Abstract: The outlook for elimination of the scourge of cervical cancer is bright, because we now have the tools to achieve this goal. In recent years human papillomavirus (HPV) vaccination in high-income countries has resulted in dramatic decreases in HPV infection and associated cervical disease. If all countries with a substantial burden of disease introduce the vaccine nationally, we can protect the vast majority of women and girls most at risk. For women who are beyond the vaccination target age, progress has been made in screening and treatment for cervical precancer, but we must accelerate this momentum to reduce incidence and mortality worldwide to the very low rates found in wealthier countries. Human and financial resources must be increased and directed to programs that follow best practices and reach all women, including the marginalized or disadvantaged. Seven key actions are recommended. Now is the time for action at national, regional, and global levels.
Publisher: CSIRO Publishing
Date: 04-05-2023
DOI: 10.1071/AH22293
Abstract: Objective To elucidate the policy implications of recent trends in the funding of radiotherapy services between 2009–10 and 2021–22. Method We use national aggregate claims data to determine time trends in the fees, benefits and out-of-pocket (OOP) costs of radiotherapy and nuclear therapeutic medicine claims funded through the Medicare Benefits Schedule (MBS) program. All dollar figures are expressed in constant 2021 Australian dollars. Results Radiotherapy and nuclear therapeutic medicine MBS claims increased by 78% whereas MBS funding increased by 137% between 2009–10 and 2021–22. The main driver of Medicare funding growth has been the Extended Medicare Safety Net, which has increased by 404%. Over the 13 year observation period, the percentage of bulk-billed claims peaked in 2017–18 at 76.1% but fell to 69.8% in 2021–22. For non-bulk billed services, average OOP costs per claim increased from $20.40 in 2009–10 to $69.78 in 2021–22. Conclusion Despite increased Medicare funding, patients face increasing financial barriers to access radiation oncology services. Policies with regard to funding radiotherapy services should be reviewed to ensure that services are easily accessible and affordable for all those needing treatment and at a reasonable cost to Government.
Publisher: Springer Science and Business Media LLC
Date: 23-03-2021
DOI: 10.1186/S12913-021-06274-X
Abstract: Improving access to radiotherapy services in low and middle-income countries (LMICs) is challenging. Many LMICs’ radiotherapy initiatives fail because of multi-faceted barriers leading to significant wastage of scarce resources. Supporting LMICs to self-assess their readiness for establishing radiotherapy services will help to improve cancer outcomes by ensuring safe, effective and sustainable evidenced-based cancer care. The aim of the study was to develop practical guidance for LMICs on self-assessing their readiness to establish safe and sustainable radiotherapy services. The Access to Radiotherapy for Cancer treatment (ARC) Project was a pragmatic sequential mixed qualitative methods design underpinned by the World Health Organisation’s ‘Innovative Care for Chronic Conditions Framework’ and ‘Health System Building Blocks Framework for Action’ conceptual frameworks. This paper reports on the process of overall data integration and meta-inference from previously published components comprising a systematic review and two-part qualitative study (semi-structured interviews and a participant validation process). The meta-inferences enabled a series of radiotherapy readiness self-assessment requirements to be generated, formalised as a RE adiness SE lf- A ssessment (RESEA) Guide’ for use by LMICs. The meta-inferences identified a large number of factors that acted as facilitators and/or barriers, depending on the situation, which include: awareness and advocacy political leadership epidemiological data financial resources basic physical infrastructure radiation safety legislative and regulatory framework project management and radiotherapy workforce training and education. ‘Commitment’, ‘cooperation’, ‘capacity’ and ‘catalyst’ were identified as the key domains enabling development of radiotherapy services. Across these four domains, the RESEA Guide included 37 requirements and 120 readiness questions that LMICs need to consider and answer as part of establishing a new radiotherapy service. The RESEA Guide provides a new resource for LMICs to self-assess their capacity to establish safe and sustainable radiotherapy services. Future evaluation of the acceptability and feasibility of the RESEA Guide is needed to inform its validity. Further work, including field study, is needed to inform further refinements. Exploratory and confirmatory factor analyses are required to reduce the data set and test the fit of the four-factor structure (commitment, cooperation, capacity and catalyst) found in the current study.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 07-2014
Publisher: SAGE Publications
Date: 10-2007
Publisher: Public Library of Science (PLoS)
Date: 31-07-2014
Publisher: JMIR Publications Inc.
Date: 23-04-2023
DOI: 10.2196/48432
Publisher: Springer Science and Business Media LLC
Date: 29-10-2011
DOI: 10.1007/S00520-011-1296-4
Abstract: People with lung cancer report a higher burden of unmet needs, specifically psychological and daily living unmet needs. They experience more psychological distress and more physical hardship than other tumour sites. This study examined the levels of unmet need and psychological distress in inoperable lung cancer patients at the start of treatment. A cross-section survey methodology was employed using baseline data from a randomised controlled trial designed to evaluate a supportive care intervention. Eligible lung cancer patients were approached to participate at the start of treatment. Consenting patients completed questionnaires prior to or just after the commencement of treatment. Reliable and valid measures included Needs Assessment for Advanced Lung Cancer Patients, Hospital Anxiety and Depression Scale and Brief Distress Thermometer. Of the 108 patients participating, the top unmet need was 'Dealing with concerns about your family's fears and worries' (62%) with the next four also coming from the psychological/emotional domain, but, on average, most needs related to medical communication. Thirty two percent of patients reported clinical or subclinical anxiety and 19% reported HADS scores suggestive of clinical or subclinical depression. Moreover, 39.8% of the s le reported distress above the cut-off on the distress thermometer and this was associated with higher needs for each need subscale (p < 0.05). People with lung cancer have high levels of unmet needs especially regarding psychological/emotional or medical communication. People with lung cancer who are classified as distressed have more unmet needs.
Publisher: Wiley
Date: 16-03-2001
DOI: 10.1046/J.1365-2648.2001.01719.X
Abstract: This paper provides a theoretical understanding of narrative research and its use in research. It aims to expose the ways narrative research, when taken beyond the researcher's lone analysis of text, can contribute to the development of clinical knowledge. Methodological approaches involving the construction of narratives are increasingly apparent in the nursing and allied health literature. Narratives, constructed from stories of nursing practice, become texts available for analysis. This is undertaken predominantly by a researcher engaged in a lone activity with little involvement of those contributing the stories. This paper is drawn from a critical praxis study of nurse-patient friendship utilizing participatory research processes. The nurses involved in the study were co-researchers in an indepth study of their relationships with patients. The paper traces the movement from naïve story, through in idual narratives during interviews with each nursing and demonstrates the changes in understanding about the narrative accounts that occurred during the participatory group process. The nurses involved in this study were able, through the use of narrative stories reexamined in a group context, to develop new insights and understandings about their practice. Knowledge generated in these ways remains grounded in the real life world of clinical nursing and gives voice to the complexity of those aspects of nursing practice that are taken for granted.
Publisher: Springer Science and Business Media LLC
Date: 02-2011
Abstract: Despite evidence that up to 35% of patients with cancer experience significant distress, access to effective psychosocial care is limited by lack of systematic approaches to assessment, a paucity of psychosocial services, and patient reluctance to accept treatment either because of perceived stigma or difficulties with access to specialist psycho-oncology services due to isolation or disease burden. This paper presents an overview of a randomised study to evaluate the effectiveness of a brief tailored psychosocial Intervention delivered by health professionals in cancer care who undergo focused training and participate in clinical supervision. Health professionals from the disciplines of nursing, occupational therapy, speech pathology, dietetics, physiotherapy or radiation therapy will participate in training to deliver the psychosocial Intervention focusing on core concepts of supportive-expressive, cognitive and dignity-conserving care. Health professional training will consist of completion of a self-directed manual and participation in a skills development session. Participating health professionals will be supported through structured clinical supervision whilst delivering the Intervention. In the stepped wedge design each of the 5 participating clinical sites will be allocated in random order from Control condition to Training then delivery of the Intervention. A total of 600 patients will be recruited across all sites. Based on level of distress or risk factors eligible patients will receive up to 4 sessions, each of up to 30 minutes in length, delivered face-to-face or by telephone. Participants will be assessed at baseline and 10-week follow-up. Patient outcome measures include anxiety and depression, quality of life, unmet psychological and supportive care needs. Health professional measures include psychological morbidity, stress and burnout. Process evaluation will be conducted to assess perceptions of participation in the study and the factors that may promote translation of learning into practice. This study will provide important information about the effectiveness of a brief tailored psychological Intervention for patients with cancer and the potential to prevent development of significant distress in patients considered at risk. It will yield data about the feasibility of this model of care in routine clinical practice and identify enablers and barriers to its systematic implementation in cancer settings. ACTRN12610000448044
Publisher: CSIRO Publishing
Date: 2015
DOI: 10.1071/AH14250
Abstract: Registries have key roles in cancer incidence, mortality and survival monitoring and in showing disparities across the population. Incidence monitoring began in New South Wales in 1972 and other jurisdictions soon followed. Registry data are used to evaluate outcomes of preventive, screening, treatment and support services. They have shown decreases in cancer incidence following interventions and have been used for workforce and other infrastructure planning. Crude markers of optimal radiotherapy and chemotherapy exist and registry data are used to show shortfalls against these markers. The data are also used to investigate cancer clusters and environmental concerns. Survival data are used to assess service performance and interval cancer data are used in screening accreditation. Registries enable determination of risk of multiple primary cancers. Clinical quality registries are used for clinical quality improvement. Population-based cancer registries and linked administrative data complement clinical registries by providing high-level system-wide data. The USA Commission on Cancer has long used registries for quality assurance and service accreditation. Increasingly population-based registry data in Australia are linked with administrative data on service delivery to assess system performance. Addition of tumour stage and other prognostic indicators is important for these analyses and is facilitated by the roll-out of structured pathology reporting. Data linkage with administrative data, following checks on the quality of these data, enables assessment of patterns of care and other performance indicators for health-system monitoring. Australian cancer registries have evolved and increasingly are contributing to broader information networks for health system management.
Publisher: AMPCo
Date: 16-05-2021
DOI: 10.5694/MJA2.51045
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 07-2008
Publisher: Mark Allen Group
Date: 03-2000
DOI: 10.12968/IJPN.2000.6.3.8940
Abstract: In a 12-month period six people died from Creutzfeldt-Jakob disease (CJD) in a Melbourne hospice. CJD is a rare neurodegenerative disease, which commonly follows an explosive course unabated into the terminal phase. For the purposes of this article the care of six patients was audited using a retrospective chart review and a focus group was conducted with nurses involved in their care. The nurses faced considerable challenges as they endeavoured to provide comfort and support for these patients. The differences in the illness trajectory of CJD in relation to the more common experiences of illness progression in advanced cancer are discussed in the context of palliative care. This review focuses on the particular care issues of six people with CJD and their families at the end of life. The personal issues experienced by the nurses who provided palliative care are also explored. The need for the future development of guidelines for families and health professionals who care for people with CJD is highlighted.
Publisher: Wiley
Date: 02-2015
DOI: 10.1111/AJR.12172
Abstract: This study aims to compare survival from breast, colon, lung, ovarian and rectal cancer by geographical remoteness in New South Wales (NSW). Retrospective population-wide registry study. NSW, Australia. A total of 107 060 NSW residents, who were diagnosed with any of the five cancers between 01 January 2000 and 31 December 2008. Kaplan-Meier survival curves and proportional hazards regression were used to compare survival by geographical remoteness of residence at diagnosis, controlling for gender, age and extent of disease at diagnosis. Remoteness was classified using standard definitions: major city, inner regional (InnReg), outer regional (OutReg) and remote (including very remote). Significant differences in survival (likelihood of death) were identified in all five cancers: breast (adjusted hazard ratio(HR) = 1.22 (95% confidence interval (CI), 1.001-1.48) in regionalised and HR = 1.30 (1.02-1.64) in metastatic disease for OutReg areas) colon (HR = 1.14 (1.01-1.29) for OutReg areas in metastatic disease) lung (HR range = 1.08-1.35 (1.01-1.48) for most non-metropolitan areas in all stages of disease excepting regionalised) ovarian (HR = 1.32 (1.06-1.65) for OutReg areas in metastatic disease, HR = 1.40 (1.04-1.90) for InnReg areas and HR = 1.68 (1.02-2.77) for OutReg areas in unknown stage of disease) and rectal (HR = 1.37 (1.05-1.78) for OutReg areas in localised and HR = 1.14 (1.002-1.30) for InnReg areas in regionalised disease). Where significant differences were found, major cities tended to show the best survival, whereas OutReg areas tended to show the worst. Although no definitive interpretation could be made regarding remote areas due to small patient numbers, their survival appeared relatively favourable. Reasons that contribute to the differences observed and the disparate results between cancer types need to be further explored in order to facilitate targeted solutions in reducing survival inequality between NSW regions.
Publisher: Cambridge University Press (CUP)
Date: 19-06-2015
DOI: 10.1017/S1478951515000723
Abstract: The difficulties in conducting palliative care research have been widely acknowledged. In order to generate the evidence needed to underpin palliative care provision, collaborative research is considered essential. Prior to formalizing the development of a research network for the state of Victoria, Australia, a preliminary study was undertaken to ascertain interest and recommendations for the design of such a collaboration. Three data-collection strategies were used: a cross-sectional questionnaire, interviews, and workshops. The questionnaire was completed by multidisciplinary palliative care specialists from across the state ( n = 61) interviews were conducted with senior clinicians and academics ( n = 21) followed by two stakeholder workshops ( n = 29). The questionnaire was constructed specifically for this study, measuring involvement of and perceptions of palliative care research. Both the interview and the questionnaire data demonstrated strong support for a palliative care research network and aided in establishing a research agenda. The stakeholder workshops assisted with strategies for the formation of the Palliative Care Research Network Victoria (PCRNV) and guided the development of the mission and strategic plan. The research and efforts to date to establish the PCRNV are encouraging and provide optimism for the evolution of palliative care research in Australia. The international implications are highlighted.
Publisher: Hindawi Limited
Date: 07-2005
DOI: 10.1111/J.1365-2354.2005.00541.X
Abstract: Enhancing quality of life and reducing the unmet needs of women are central to the successful management of advanced breast cancer. The objective of this study was to investigate the quality of life and support and information needs of urban women with advanced breast cancer. This study was conducted at four large urban hospitals in Melbourne, Australia. A consecutive s le of 105 women with advanced breast cancer completed a questionnaire that contained the European Organization of Research and Treatment of Cancer Quality of Life Q-C30 and the Supportive Care Needs Survey. Between one quarter and a third of the women reported difficulties with their physical, role and social functioning, and a little over a quarter of the women reported poor global health status. Fatigue was a problem for most women. The highest unmet needs were in the psychological and health information domains. Almost no differences in unmet needs were detected when comparing different demographic and disease characteristics of women. Health care providers should routinely monitor the quality of life and needs of women with advanced breast cancer to ensure that appropriate treatment, information or supportive services are made available.
Publisher: Springer Science and Business Media LLC
Date: 12-01-2011
Publisher: Springer Science and Business Media LLC
Date: 16-08-2016
Publisher: Elsevier BV
Date: 04-2016
DOI: 10.1016/J.CANEP.2016.02.006
Abstract: Aboriginal and Torres Strait Islander people (referred to in this paper as "Aboriginal people") generally have lower cancer survivals and more advanced stages at diagnosis than non-Aboriginal people. There is conflicting evidence on whether these disparities vary by socio-economic disadvantage and geographic remoteness. This study examines variations in these disparities in New South Wales (NSW), Australia. Data for cancers diagnosed in 2000-2008 were extracted from the NSW Cancer Registry (n=264,219). Missing Aboriginal status (13.3%) was multiply imputed. Logistic regression and competing risk regression models were used to examine likelihood of advanced summary stage and risk of cancer death among Aboriginal compared with non-Aboriginal people by socio-economic disadvantage (categorised into quintiles 1: least disadvantaged-5: most disadvantaged) and remoteness. Aboriginal people showed a general pattern of more advanced stage at diagnosis compared with non-Aboriginal people across socio-economic disadvantage and remoteness categories. After adjusting for demographic factors, year of diagnosis, summary stage and cancer site, Aboriginal people living outside the least disadvantaged areas had an increased risk of cancer death compared with non-Aboriginal people living in similar areas (sub-hazard ratio SHR 1.41, 95% confidence interval CI 1.09-1.81 SHR 1.59, 95%CI 1.31-1.93 SHR 1.42, 95%CI 1.22-1.64 and SHR 1.34, 95%CI 1.22-1.48 for quintiles 2-5, respectively). Compared with non-Aboriginal people, Aboriginal people had an elevation in the risk of cancer death irrespective of the remoteness, with the most pronounced elevations detected in remote/very remote areas (SHR 1.56, 95%CI 1.10-2.21). Compared with non-Aboriginal people, Aboriginal people had a higher risk of cancer death and higher likelihood of more advanced stage across socio-economic disadvantage and remoteness categories. All areas appear to require attention in endeavours to improve cancer survival outcomes for Aboriginal people.
Publisher: Hindawi Limited
Date: 09-2007
DOI: 10.1111/J.1365-2354.2006.00772.X
Abstract: This paper describes a systematic process for the development of educational audio-visual materials that are designed to prepare patients for potentially threatening procedures. Literature relating to the preparation of patients for potentially threatening medical procedures, psychological theory, theory of diffusion of innovations and patient information was examined. Four key principles were identified as being important: (1) stakeholder consultation, (2) provision of information to prepare patients for the medical procedure, (3) evidence-based content, and (4) promotion of patient confidence. These principles are described along with an ex le of the development of an audio-visual resource to prepare patients for chemotherapy treatment. Using this ex le, practical strategies for the application of each of the principles are described. The principles and strategies described may provide a practical, evidence-based guide to the development of other types of patient audio-visual materials.
Publisher: SAGE Publications
Date: 14-10-2020
Abstract: The context of an intervention may influence its effectiveness and success in meeting the needs of the targeted population. Implementation science frameworks have been developed, but previous literature in this field has been mixed. This paper aimed to assess the implementation success of interventions, identified from a systematic review, that reduced inequalities in cancer screening between people in low and high socioeconomic groups. The implementation framework by Proctor et al. was utilised to assess the potential success of 6 studies reporting on 7 interventions in the “real-world” environment. A standardised rating system to identify the overall implementation success of each intervention was established. Four interventions (57%) demonstrated high potential to be implemented successfully. Interventions included enhanced reminder letters and GP-endorsed screening invitations, containing evidence on the acceptability, from participants and stakeholders, appropriateness and direct cost of the intervention. While some interventions reduced socioeconomic inequalities in cancer screening participation, there have been missed opportunities to integrate the experiences of the targeted population into design and evaluation components. This has limited the potential for transferability of outcomes to other settings.
Publisher: Springer Science and Business Media LLC
Date: 02-06-2017
Publisher: Mary Ann Liebert Inc
Date: 02-2006
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 2008
DOI: 10.1097/GME.0B013E31805C08DC
Abstract: Hot flashes are frequent and bothersome in menopausal women and breast cancer survivors. Most pharmacological interventions or herbal therapies for hot flashes have limitations because of contraindications in breast cancer survivors, side effects, or lack of proven efficacy. The aim of this study was to assess the effects of psychoeducational interventions, including relaxation, on hot flashes in menopausal women and women previously diagnosed with breast cancer. MEDLINE, CINAHL, PsycInfo, the Cochrane Library, and reference lists of articles were searched for relevant articles published between January 1980 and December 2006. Data extraction and quality assessment were carried out by two of the authors. Fourteen studies involving 475 patients were included. Five studies evaluated psychoeducational interventions, including education, counseling, cognitive-behavioral strategies, and mindfulness-based stress reduction. All showed an improvement in vasomotor symptoms, although the experimental group in the two studies containing the largest numbers of participants also received pharmacological therapies. Nine trials evaluated the efficacy of relaxation techniques to improve hot flashes. Five of these studies showed a significant improvement in hot flashes. Only three of the 14 studies evaluated a psychoeducational intervention in breast cancer survivors. Two of these showed a significant improvement in hot flashes. Psychoeducational interventions, including relaxation, seem to alleviate hot flashes in menopausal women and breast cancer survivors however, the methodological quality of published research is either fair or poor. More studies are required, especially in the breast cancer population where only a few studies are available, before psychoeducational interventions are offered as a treatment option.
Publisher: Springer Science and Business Media LLC
Date: 23-10-2018
DOI: 10.1007/S00520-017-3929-8
Abstract: This report describes the views of front-line health professionals who participated in a randomised controlled trial examining a model of care in which depressed cancer patients received a brief psychosocial intervention. Health professionals from four cancer centres received focused training, skill development and clinical supervision in order to deliver the intervention. We interviewed 20 health professionals asking them about their perceptions of participation in the study and their views about more widespread implementation of this model of care. Participants strongly advocated for widespread implementation of this model of care however, their ability to deliver the intervention varied depending on clinical roles and responsibilities. Many oncology nurses expressed conflict about delivering a psychosocial intervention when their clinical unit was busy. Finding a private area in which to talk was a frequent barrier in busy clinical units. Participants reported that they applied the skills and insights acquired in the study in their routine clinical work. Supervision was highly valued and was feasible to provide in clinical settings. Psychosocial care can be provided by a range of health professionals if they receive focused training and have access to supervision, but competing clinical demands are likely to limit their ability to routinely provide psychosocial care. This suggests that training should target professionals who have greater autonomy and flexibility in their work roles. ANZCTR1260000448044.
Publisher: BMJ
Date: 18-08-2014
Publisher: Wiley
Date: 23-08-2004
Publisher: Wiley
Date: 10-04-2019
DOI: 10.1002/PON.5065
Abstract: To determine the cost-effectiveness of RT Prepare in reducing breast cancer patients' psychological distress before treatment, compared with usual care. RT Prepare, an intervention involving patient education and support consultations with a radiation therapist (RT), was implemented at three Australian sites (Australian New Zealand Clinical Trials Registration: ACTRN12611001000998). The primary outcome was change in psychological distress using the Hospital Anxiety and Depression Scale (HADS) secondary outcomes were changes in quality of life (QoL) and additional health service use. Costs (2015 $AU) included consultation time and training delivery. Between-group comparisons of HADS and QoL used generalised linear mixed models, and comparisons of health service use used negative binomial regression. Incremental cost-effectiveness ratios (ICERs) indicated mean costs per 1-point decrease in HADS score. Sensitivity analyses explored variation in facility size and uncertainty in intervention effectiveness. Among 218 controls and 189 intervention participants, the intervention significantly lowered HADS scores at treatment commencement (adjusted mean difference 1.06 points). There was no significant effect on QoL or additional service use. Mean intervention costs were AU$171 per participant (US$130, €119) mostly related to RT training (approximately AU$142 (US$108, €99). An ICER of $158 (US$120, €110) was estimated. Cost-effectiveness improved in a sensitivity analysis representing a large facility with higher patient numbers. This study provides new data on the cost-effectiveness of an RT-delivered intervention to reduce psychological distress prior to treatment, which will be useful to inform delivery of similar services. As most costs were upfront, cost-effectiveness would likely improve if implemented as standard care.
Publisher: Springer Science and Business Media LLC
Date: 05-05-2009
DOI: 10.1007/S11764-009-0086-1
Abstract: Increasing numbers of people survive cancer beyond diagnosis and treatment. Many survivors have ongoing needs and they may encounter fragmented, poorly coordinated follow up care. Survivorship care plans (SCP) have been promoted as a key aspect of survivorship care. This study aimed to survey key stakeholders in the care of people with colorectal cancer (survivors, primary care providers and hospital-based healthcare professionals) regarding follow-up and SCP. In study 1, cancer survivors completed a questionnaire regarding their follow-up and experiences during survivorship. Participants' primary care physicians completed a phone interview regarding proposed SCP elements. A subgroup of survivors reviewed a s le SCP and participated in a phone interview regarding this. In study 2, healthcare professionals working with colorectal cancer patients completed a questionnaire regarding follow-up and proposed elements of a SCP. Twenty survivors completed the questionnaire, 14 primary care providers completed a phone interview and 12 survivors reviewed the s le SCP. Ninety-five healthcare professionals (30 medical professionals and 65 nurses) completed the questionnaire. There was strong support for core elements of the SCP. Additionally, nurses and survivors expressed support for supportive care and psychosocial elements. There was lack of consensus regarding who should prepare and discuss the SCP. There is strong support for the development and use of SCPs for bowel cancer survivors. There is some variation in opinion regarding ideal content of the SCP, who might prepare it, and how it might be discussed and utilised. Overcoming identified barriers to implementing SCPs for bowel cancer survivors is necessary for high quality cancer care.
Publisher: Cambridge University Press (CUP)
Date: 07-08-2014
DOI: 10.1017/S1478951513000060
Abstract: This study examines the ability of the distress thermometer to accurately identify patients with higher symptoms, unmet needs and psychological morbidity. Baseline data collected as part of a randomized controlled trial evaluating a nurse-led supportive care intervention for men with prostate cancer commencing radiotherapy at a specialist cancer hospital in Melbourne, Australia. Measures assessed global distress (DT), anxious and depressive symptomatology (HADS), prostate-cancer specific quality of life (EPIC-26), unmet supportive care needs (SCNS-SF34R) and cancer treatment-related concerns (CATS). Following descriptive and correlational analysis, hierarchical multiple regression was employed to examine the contribution of variable sets to explaining variance in DT scores. Less than 20% of men reported DT scores of 4 or higher, indicating overall low distress. The DT accurately identified almost all men reporting HADS score indicative of anxious or depressive symptomatology, suggesting it accurately identifies psychological morbidity. Importantly, the DT identified a further group of distressed men, not identified by HADS, whose distress related to unmet needs and prostate cancer-specific issues, indicating the DT is superior in identifying other forms of distress. While the hierarchical multiple regression confirmed anxious and depressive symptomatology as the best predictor of distress score, many other scales are also good predictors of DT scores, supporting the argument that distress is multi-determined. Nurses can be confident that the DT accurately identifies patients with psychological morbidity and importantly identifies other patients with distress who may require intervention. A distress score of 4 or higher identified participants with higher physical symptomatology, higher unmet needs, more concerns about treatment and poorer quality of life. The low prevalence of distress reaching cut off scores suggests nurses would not be overwhelmed by the outcomes of screening and could use the score to prioritise the patients who need greater attention at entry to radiotherapy services.
Publisher: Springer Science and Business Media LLC
Date: 09-2006
Publisher: Hindawi Limited
Date: 20-01-2017
DOI: 10.1111/ECC.12424
Abstract: Patient misunderstanding of cancer clinical trial participation is identified as a critical issue and researchers have developed and tested a variety of interventions to improve patient understanding. This systematic review identified nine papers published between 2000 and 2013, to evaluate the effects of interventions to improve patient understanding of cancer clinical trial participation. Types of interventions included audio-visual information, revised written information and a communication training workshop. Interventions were conducted alone or in combination with other forms of information provision. The nine papers, all with methodological limitations, reported mixed effects on a small range of outcomes regarding improved patient understanding of cancer clinical trial participation. The methodological limitations included: (1) the intervention development process was poorly described (2) only a small element of the communication process was addressed (3) studies lacked evidence regarding what information is essential and critical to enable informed consent (4) studies lacked reliable and valid outcome measures to show that patients are sufficiently informed to provide consent and (5) the intervention development process lacked a theoretical framework. Future research needs to consider these factors when developing interventions to improve communication and patient understanding during the informed consent process.
Publisher: Wiley
Date: 20-12-2010
DOI: 10.1002/PON.1896
Abstract: Cancer patients experience high levels of pre-treatment anxiety. Chemotherapy and radiotherapy are threatening medical procedures. Preparation for these procedures should include the provision of sensory and procedural information, and addressing fears. The aim of this study was to develop a cancer treatment survey (CaTS) to assess the preparation for chemotherapy and radiotherapy in cancer patients. Drawing on evidence for how to prepare patients for threatening procedures, items were generated by psychosocial/clinical experts and pilot tested with cancer patients. The 36-item draft CaTS was administered to 192 cancer patients commencing chemotherapy for lymphoma, breast or colon cancer. Participants also completed the Hospital Anxiety and Depression Scale (HADS) and basic medical and demographic information was recorded. A systematic process of item selection removed 11 items. Factor analysis indicated a two-factor solution, with 11 items representing sensory sychological concerns and 14 items representing procedural concerns. The two subscales demonstrated excellent internal reliability with Cronbach's alpha both over 0.90 and the average inter-item correlation for each scale exceeded 0.30. Divergent validity was established for both CaTS subscales with the HADS-A and-T (all r<0.30). Younger participants (under 65 years of age) had significantly greater procedural concerns (p = 0.001 medium effect). The CaTS is a two factor, 25-item measure that assesses sensory sychological concerns and procedural concerns relating to cancer treatment. The instrument provides a reliable and valid outcome measure for interventions to prepare cancer patients for chemotherapy and radiotherapy.
Publisher: Springer Science and Business Media LLC
Date: 21-02-2012
DOI: 10.1007/S00520-012-1398-7
Abstract: Self-reported taste alterations are common in people receiving chemotherapy however, it is usually unclear whether these reports refer to changes to the sense of taste itself or to problems related to the broader phenomenon of flavour, or the hedonic experience of eating and drinking. The purpose of this study was to explore patient and carer descriptions, experiences and consequences of taste and flavour changes associated with oxaliplatin treatment. This study utilised a grounded theory research design. Purposeful s ling was used to recruit eligible patients who had self-reported taste changes in relation to oxaliplatin-containing chemotherapy for colorectal cancer. Content analysis of interview data was performed using an analysis framework derived from previous sensory and nutritional sciences and supportive care research. Ten patients and four carers participated in semi-structured interviews. The overarching theme identified from the data was reduced food enjoyment. In addition to changes to taste, participants described sensory and hedonic changes which influence overall flavour perception and food enjoyment. Reduced food enjoyment had dietary, social and emotional consequences for patients and carers. 'Taste' problems during oxaliplatin treatment mostly relate to the broader phenomena of flavour. This study has helped to unravel the major sensory determinants of the eating and drinking experience in the chemotherapy setting and has provided guidance regarding relevant and measurable endpoints of chemotherapy-related flavour changes. There remains a gap in knowledge between the pattern of flavour changes associated with chemotherapy treatment and how this influences dietary intake and nutritional status.
Publisher: Hindawi Limited
Date: 09-2004
Publisher: AMPCo
Date: 02-2015
DOI: 10.5694/MJA14.01701
Publisher: Wiley
Date: 02-2015
DOI: 10.5694/MJA14.00579
Abstract: To investigate the quality of end-of-life care for patients with metastatic non-small cell lung cancer (NSCLC). Retrospective cohort study of patients from first hospitalisation for metastatic disease until death, using hospital, emergency department and death registration data from Victoria, Australia, between 1 July 2003 and 30 June 2010. Emergency department and hospital use aggressiveness of care including intensive care and chemotherapy in last 30 days palliative and supportive care provision and place of death. Metastatic NSCLC patients underwent limited aggressive treatment such as intensive care (5%) and chemotherapy (< 1%) at the end of life however, high numbers died in acute hospitals (42%) and 61% had a length of stay of greater than 14 days in the last month of life. Although 62% were referred to palliative care services, this occurred late in the illness. In a logistic regression model adjusted for year of metastasis, age, sex, metastatic site and survival, the odds ratio (OR) of dying in an acute hospital bed compared with death at home or in a hospice unit decreased with receipt of palliative care (OR, 0.25 95% CI, 0.21-0.30) and multimodality supportive care (OR, 0.65 95% CI, 0.56-0.75). Because early palliative care for patients with metastatic NSCLC is recommended, we propose that this group be considered a benchmark of quality end-of-life care. Future work is required to determine appropriate quality-of-care targets in this and other cancer patient cohorts, with particular focus on the timeliness of palliative care engagement.
Publisher: AMPCo
Date: 2017
DOI: 10.5694/MJA16.00150
Abstract: To examine differences in the proportions of people diagnosed with pancreatic cancer who underwent pancreatectomy, post-operative outcomes and 5-year survival in different New South Wales administrative health regions of residence. Retrospective analysis of NSW data on pancreatic cancer incidence and surgery, 2005-2013. The proportion of newly diagnosed patients with pancreatic cancer who were resected in each region 90-day post-operative mortality one-year post-operative survival 5-year post-diagnosis survival. 14% of people diagnosed with pancreatic cancer during 2010-2013 (431 of 3064) underwent pancreatectomy, an average of 108 resections per year. After adjusting for age, sex and comorbidities, the proportion that underwent resection varied significantly between regions, ranging between 8% and 21% (P<0.001). Higher resection rates were not associated with higher post-operative 90-day mortality or lower one-year survival (unadjusted and risk-adjusted analyses). Higher resection rates were associated with higher 5-year post-diagnosis survival: the mean survival in regions with resection rates below 10% was 3.4%, compared with 7.2% in regions with rates greater than 15% (unadjusted and adjusted survival analyses P<0.001). There was a positive association between regional resection rate and the pancreatectomy volume of hospitals during 2005-2009. An additional 32 people would be resected annually if resection rates in low rate regions were increased to the 80th percentile regional resection rate (18%). There is significant geographic variation in the proportion of people with pancreatic cancer undergoing pancreatectomy, and the 5-year survival rate is higher in regions where this proportion is higher.
Publisher: Springer Science and Business Media LLC
Date: 14-05-2015
Publisher: Hindawi Limited
Date: 12-2002
DOI: 10.1046/J.1365-2354.2002.00314.X
Abstract: Caring for a family member or friend dying of cancer can be extremely stressful. Past research identified that lay caregivers frequently report unmet needs related to guidance and support to assist them to provide care. This study sought to extend prior needs-based research towards the development of a new nursing intervention focused on the guidance and support provided to persons caring for a relative or friend dying of cancer. Focus groups were conducted with current lay caregivers, bereaved lay caregivers and palliative care nurses. The findings endorsed the applicability of previous caregiver need research to the Australian context. Participants revealed that caregivers were commonly unprepared for their role and desired much more guidance and support from health professionals. Importantly, the research provided the essential ingredients for the future development of a new intervention aimed at augmenting home lay palliative caregiver guidance and support.
Publisher: Springer Science and Business Media LLC
Date: 29-09-2017
Publisher: SAGE Publications
Date: 19-09-2012
Abstract: Although the unit of care in palliative care is defined as the patient and their family, there are few rigorous studies on how to improve support for family and friends as they take on the role of caregiver for someone at the end of life. Separate to patient evaluation and care, this pilot study aimed to define the feasibility and possible outcome measures to evaluate routine assessments and supports specifically for caregivers. In a quasi-experimental design, two communities were included: one received standard specialist palliative care support and one additionally was allocated to a community network facilitator who assessed caregivers’ needs and helped mobilize the caregiver’s own support network or initiated contact with other community supports in three planned visits. Data were collected at baseline, 4 and 8 weeks using three caregiver assessment tools. Within group comparisons were made using Wilcoxon signed rank test and between group using the Mann–Whitney U-test. Sixty-six caregivers participated. At 8 weeks, participants in the intervention arm showed significant within-group improvement in caregiver fatigue, sufficient support from others, decreased resentment in the role, greater confidence in asking for assistance and were better able to find resources and support. No between-group changes were seen in this pilot study. There were objective measures of improved support within the intervention group over time for caregivers through the active engagement of the community network facilitator. This pilot supports the case for an adequately powered study.
Publisher: Wiley
Date: 07-02-2020
DOI: 10.1111/AJCO.13310
Publisher: Springer Science and Business Media LLC
Date: 14-09-2017
Publisher: Springer Science and Business Media LLC
Date: 29-11-2011
DOI: 10.1007/S00520-009-0791-3
Abstract: Volunteers from Peter MacCallum Cancer Centre (Peter Mac) Patient Information and Support Centre (PISC) assist the Cancer Support Nurse by helping patients and families/carers find information and provide face-to-face peer support. Benefits of shared personal experiences between volunteer and patient are clearly different from professional support. Volunteers require specific skill sets and detailed preparation for this role. Volunteers completed a 3-day training programme adapted from the Cancer Council Victoria's 'Cancer Connect Telephone Peer Support Volunteer' training programme. The focus was role expectations and boundaries for peer support volunteers, debriefing, communication skills training, support services, complementary and alternative therapies and internet information. Assessment included a quiz and observation for a range of competencies. Role-play with simulated patients developed appropriate support skills. Eight volunteers participated. Pre-training questionnaires revealed all volunteers highly self-rated existing skills supporting people affected by cancer. During training, volunteers recognised these skills were inadequate. All agreed that role-play using an actor as a 'simulated patient' helped develop communication skills however, the experience proved challenging. Post-training all reported increased knowledge of role definition and boundaries, supportive communication skills, supports available for patients and families/carers and importance of self-care. Facilitators recommended seven of the eight participants be accredited PISC Peer Support Volunteers. One volunteer was assessed unsuitable for consistently overstepping the boundaries of the peer support role and withdrew from training. Success of the programme resulted in a trained 'face-to-face peer support volunteer' group better equipped for their role. Sixteen months following training, all who completed the programme remain active volunteers in the PISC. Planned educational updates include needs identified by the volunteers. The training programme would require adapting for future peer support volunteers.
Publisher: Mark Allen Group
Date: 04-2001
DOI: 10.12968/IJPN.2001.7.4.9034
Abstract: This is an abridged version of the sixth annual Robert Tiffany Lecture presented on 14 March 2001 at the Royal Marsden’s National Cancer Nursing Conference in London. Robert Tiffany was the chief nurse at the Royal Marsden, London from 1976 until 1993. The lecture is named after him to commemorate his work establishing oncology nursing across the world and, more specifically, developing its practice at the Royal Marsden. This lecture examined the silences that exist in nursing practice – the things that nurses do not talk about or even understand as part of their work. Drawing on research that explored nurse–patient relationships in cancer and palliative care settings, this lecture highlighted the closeness and intimate nature of such relationships and reflected on their impact on nurses, patients and nursing practice.
Publisher: Elsevier BV
Date: 02-2016
DOI: 10.1016/J.CANEP.2015.10.032
Abstract: Past studies generally indicate that socio-demographic disadvantage is associated with lower cancer survival but evidence of an association with stage of cancer at diagnosis has been less consistent. This study examines the associations between distant summary stage and remoteness, socio-economic status and country of birth in New South Wales for invasive cancers overall and by cancer site. The population-based New South Wales Central Cancer Registry was used to obtain data on all cases diagnosed in 1980-2009 (n=699,382). Logistic regression models were used to compute odds ratios (ORs) with 95% confidence intervals (CIs) for odds of distant summary stage at diagnosis. A higher likelihood of being diagnosed with distant cancer was detected for those living in the most socio-economically disadvantaged areas compared with the least disadvantaged areas (OR 1.27, 95% CI 1.24-1.30) and for those born in other English and non-English speaking countries compared with Australian-born (OR 1.10, 95% CI 1.07-1.12 and OR 1.12, 95% CI 1.10-1.14, respectively) after adjusting for age, sex, diagnostic period, remoteness, socio-economic status and country of birth. Cases living in inner (OR 0.90, 95% CI 0.88-0.91) and outer regional (OR 0.92, 95% CI 0.89-0.94) areas were less likely to be diagnosed with distant stage than cases living in major cities. Odds of distant stage increased over time for those living in socio-economically disadvantaged areas. In cancer site-specific analyses, living in socio-economically disadvantaged areas was generally a stronger predictor of distant stage than remoteness or country of birth. Our results highlight the importance of lower socio-economic status as a predictor of distant stage at diagnosis. Socio-demographic disadvantage patterns varied for specific cancers, but in general, policy actions are recommended that emphasize earlier detection of cancers in people from lower socio-economic areas.
Publisher: Elsevier BV
Date: 03-2017
Publisher: Cambridge University Press (CUP)
Date: 25-10-2007
DOI: 10.1017/S1478951507000570
Abstract: This study builds on previous work that explored the lived experience of meaning in advanced cancer. The aims were to explore the associations of suffering (physical and existential distress) and coping (via social support) with psychological distress and global meaning using a battery of instruments among adults attending an Australian metropolitan cancer service ( n = 100). The contribution of suffering and coping via social support to psychological distress and meaning were examined using a variety of statistical methods. Multiple regression analyses were conducted to further examine relative contributions to both psychological distress and global meaning. Physical and existential distress were found to be positively associated with psychological distress whereas high social support and personal meaning are related to lower levels of psychological distress. Social support was the strongest correlate of global meaning whereas high levels of existential distress were related to lower levels of global meaning. On the basis of this study, it is concluded that the factors related to suffering clearly promote psychological distress, and the reverse is true for global meaning for those living with cancer. This study speaks to the clinical complexity of the dynamic experience of suffering and meaning in cancer. We need to better understand the impact of physical suffering and meaning in the lives of this population and to actively work toward the enhancement of social support and connection with others for this group. Optimal palliative and family-centered care blended with therapies that promote a sense of meaning of life lived appear crucial to ameliorate suffering.
Publisher: SAGE Publications
Date: 03-2009
Abstract: Despite the promotion of family meetings as an essential tool for information sharing and planning in palliative care, minimal evidence exists to show their effectiveness. We sought to rectify this gap in evidence-based practice by evaluating recently developed clinical guidelines for facilitating family meetings. Palliative care nurses were trained to conduct family meetings using the guidelines. To assess the effectiveness of the guidelines, primary family carers who attended a family meeting completed a self-report instrument to measure unmet needs at three time periods: immediately before the meeting (T1), immediately after the meeting (T2) and two days after the meeting (T3). Phone interviews with carers were also conducted at T3. Patients, health professionals and family meeting facilitators were also invited to complete an evaluation form at T2. A focus group was conducted at the end of the project to gain reflections from the family meeting facilitators about their role, re-evaluate the family meeting clinical guidelines and discuss barriers and facilitators for ongoing implementation. Twenty family meetings were conducted at St Vincent’s Hospital (Melbourne, Australia). A total of 42 participants were involved, including 20 family carers, 4 patients and 18 health professionals. Family carers reported a statistically significant increase in having their care needs met, from T1 to T2, which was maintained at T3 they also reported that the meetings were useful. Health professionals and patients advised that the meetings were well facilitated. The results from this pilot study indicate that family meetings, conducted using specific clinical practice guidelines, were useful and effective. However, more research is required to confirm these findings. Strategies for implementation and further research are outlined.
Publisher: Wiley
Date: 27-03-2012
DOI: 10.1002/PON.3071
Abstract: Understanding patient's perceptions about palliative care is necessary to make an effective referral. The aim was to develop and validate a measure of patient perceptions. Items were generated through patient, family caregiver and health professional interviews. The Perceptions of Palliative Care Instrument (PPCI) was administered to 85 patients with advanced cancer (AC). A subset (n = 39) completed it 7 days later. Participants also completed the Palliative Care Outcome Scale (POS), the Edmonton Symptom Assessment Scale (ESAS) and the Distress Thermometer (DT) for validation purposes. Factor analysis revealed four domains (positive and negative emotional and cognitive reactions to palliative care, emotional and practical palliative care needs and perceptions of health) and eight subscales with factor loadings for all items above 0.51, explaining 61-81% of the total variance. Reliability analyses revealed high internal consistency (Cronbach's alpha coefficients >0.76). Intraclass correlation coefficients showed moderate to strong correlations between time points indicating stability over time. All POS items correlated with two or more dimensions of the PPCI (all r > 0.30) ESAS total distress correlated positively with the palliative care needs domain and the DT with needs and perceived burden (all r > 0.30). The PPCI is a four-factor, 37-item measure that assesses perceptions of palliative care held by patients with AC. The measure has good internal consistency, test-retest reliability and convergent validity.
Publisher: Hindawi Limited
Date: 05-2006
DOI: 10.1111/J.1365-2354.2005.00639.X
Abstract: This study describes the concordance between advanced cancer patients' self-report of quality of life and their caregivers' perception of the patients' quality of life at two time points. It is often necessary for health professionals to rely on information about the patients' quality of life that is provided by family caregivers (proxy), even though information from the patients is considered 'the gold standard'. Therefore, it is important to establish how reliable this proxy information is. Data were collected 4-6 weeks following diagnosis of recurrent or progressive disease, and again 12 weeks later. Fifty-one patients and their caregivers completed the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire (QLQ-C30), version 2.0 at both time points. Descriptive statistics were used to calculate patient and caregiver scores and describe the s le. The level of agreement between the two scores, the patients' self-report and the family caregivers' score, was calculated on the mean scores of each scale. In general, most caregivers were able to accurately rate the global quality of life, the level of functioning and the degree of symptom distress experienced by the person they were caring for, when compared with the patients' self-rating. Caregiver ratings for physical domains tended to be more in agreement with those of patients as compared with ratings of the psychosocial domains. This study suggests information from proxy raters is reliable when the proxy is a family caregiver, and this remains true over time.
Publisher: SAGE Publications
Date: 30-07-2013
Abstract: Preventable medication errors impact substantially on the Australian healthcare system. Where ‘poor communication of medical information at transition points is responsible for as many as 50% of all medication errors’, a leading contributor for this type of medication error is lack of consumer knowledge about medicines information. This study was aimed at designing and testing the effectiveness of a consumer–healthcare professional partnership model towards effective medication reconciliation. This model aims to empower consumers about their medicines information, so that they would contribute more effectively to medication reconciliation and thereby minimise medication errors occurring at transition points. Components of this model were informed by qualitative data gleaned from patient opinion surveys, focus group sessions involving nurses, doctors and pharmacists working at the hospital and results of a literature search of medication safety tools. Programme development was informed by health improvement approaches centred on a Plan-Do-Study-Act cycle. Evaluation for effectiveness was conducted within a framework of a controlled before and after study. Results revealed that there was a 1.4-fold increase in the reporting rate of pharmacists intervention. The study could not demonstrate that the designed intervention was effective in minimising near-misses. However, there is statistically insignificant reduction in errors for patients that were correctly exposed to the intervention. Anecdotal evidence suggests there is utility for a patient population keen to claim greater ownership of their medicines information. Further, we advocate that patient education about medicines and the establishment of a consumer–healthcare professional model occur prior to ward admission.
Publisher: Elsevier BV
Date: 04-2017
Abstract: When using area-level disadvantage measures, size of geographic unit can have major effects on recorded socioeconomic cancer disparities. This study examined the extent of changes in recorded socioeconomic inequalities in cancer survival and distant stage when the measure of socioeconomic disadvantage was based on smaller Census Collection Districts (CDs) instead of Statistical Local Areas (SLAs). Population-based New South Wales Cancer Registry data were used to identify cases diagnosed with primary invasive cancer in 2000-2008 (n=264,236). Logistic regression and competing risk regression modelling were performed to examine socioeconomic differences in odds of distant stage and hazard of cancer death for all sites combined and separately for breast, prostate, colorectal and lung cancers. For all sites collectively, associations between socioeconomic disadvantage and cancer survival and distant stage were stronger when the CD-based socioeconomic disadvantage measure was used compared with the SLA-based measure. The CD-based measure showed a more consistent socioeconomic gradient with a linear upward trend of risk of cancer death/distant stage with increasing socioeconomic disadvantage. Site-specific analyses provided similar findings for the risk of death but less consistent results for the likelihood of distant stage. The use of socioeconomic disadvantage measure based on the smallest available spatial unit should be encouraged in the future. Implications for public health: Disadvantage measures based on small spatial units can more accurately identify socioeconomic cancer disparities to inform priority settings in service planning.
Publisher: Frontiers Media SA
Date: 05-06-2012
Abstract: In Australia, the incidence of cancer diagnoses is rising along with an aging population. Cancer treatments, such as chemotherapy, are increasingly being provided in the ambulatory care setting. Cancer treatments are commonly associated with distressing and serious sideeffects and patients often struggle to manage these themselves without specialized real-time support. Unlike chronic disease populations, few systems for the remote real-time monitoring of cancer patients have been reported. However, several prototype systems have been developed and have received favorable reports. This review aimed to identify and detail systems that reported statistical analyses of changes in patient clinical outcomes, health care system usage or health economic analyses. Five papers were identified that met these criteria. There was wide variation in the design of the monitoring systems in terms of data input method, clinician alerting and response, groups of patients targeted and clinical outcomes measured. The majority of studies had significant methodological weaknesses. These included no control group comparisons, small s le sizes, poor documentation of clinical interventions or measures of adherence to the monitoring systems. In spite of the limitations, promising results emerged in terms of improved clinical outcomes ( em e.g. /em pain, depression, fatigue). Health care system usage was assessed in two papers with inconsistent results. No studies included health economic analyses. The ersity in systems described, outcomes measured and methodological issues all limited between-study comparisons. Given the acceptability of remote monitoring and the promising outcomes from the few studies analyzing patient or health care system outcomes, future research is needed to rigorously trial these systems to enable greater patient support and safety in the ambulatory setting.
Publisher: Springer Science and Business Media LLC
Date: 15-08-2007
DOI: 10.1007/S11764-007-0022-1
Abstract: Improvements in cancer screening and treatment are resulting in an increase in the number of cancer patients completing treatment who are apparently cured of their disease. There are few information resources for people at this juncture. An evidence-based DVD was developed for in iduals at this stage with information about experiences encountered as a cancer survivor (CS). Focus groups and a literature review were conducted to establish the DVD content. The DVD was developed in conjunction with a multidisciplinary committee and according to a recommended best-practice framework. Interviews with CS and evidence-based commentary by health professionals (HP) made up the DVD. The final phase of development was to evaluate the usefulness and acceptability of the DVD with CS and HP. A 52-min DVD with nine chapters was developed featuring 13 CS, a medical oncologist and a clinical psychologist. Thirty-two CS and 116 HP evaluated the DVD. Both groups considered the DVD was informative (CS 97% HP 98%), easy to understand (CS and HP 100%), reassuring (CS 91% HP 92%), relevant to their circumstances (CS 68% HP 97%), did not contain too much information (CS 75% HP 71%) and was not distressing to watch (CS 84% HP 80%). The DVD was well accepted by both CS and HP. Modifications were made as a result of the evaluations, the most significant of which was re-filming of commentary by the two HP. Future research should evaluate the effectiveness of the DVD in controlled trials with outcomes such as quality of long term health, symptom burden and cancer specific distress. The DVD is expected to be a useful resource for CS living beyond effective treatment for cancer.
Publisher: JMIR Publications Inc.
Date: 06-12-2017
DOI: 10.2196/MHEALTH.8349
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 05-2011
Publisher: Cambridge University Press (CUP)
Date: 28-07-2008
DOI: 10.1017/S1478951508000424
Abstract: Lung cancer is the leading cause of cancer death. It is associated with a high level of morbidity, particularly fatigue, pain, breathlessness, and coughing. These symptoms can have a substantial impact on psychosocial functioning. It is critical to have effective interventions demonstrated to improve quality of life particularly for those with advanced disease. However there is a paucity of high quality intervention research to guide practice in this area. This article discusses the challenges in conducting supportive care research in this group, including the patient's level of literacy in English, poor performance status, rapidly fluctuating health status, and familial or professional “gate-keeping.” Many of these challenges can be overcome by broadening eligibility criteria, permitting some flexibility in relation to recruitment and data collection procedures, working closely with the treatment team, involving the patient's family, minimizing practical difficulties associated with intervention delivery, and reducing study burden in other ways, such as limiting the amount of data collected from the patient and shortening follow-up time intervals. We explore these potential solutions drawing on the experience of conducting a randomized controlled trial of a support intervention for people with lung cancer and their family.
Publisher: Wiley
Date: 29-07-2012
DOI: 10.1002/PON.2016
Abstract: The Supportive Care Needs Survey-short form (SCNS-SF34) is a commonly used instrument that assesses levels of unmet needs in cancer patients across five domains. Participants in a number of recent studies have experienced difficulties with the five-point, two-level response scale. This study aimed to validate the SCNS-SF34 with a simplified four-point response format in a large s le of Australian men with prostate cancer. Three hundred thirty-two men with prostate cancer commencing external beam radiotherapy completed the SCNS-SF34 with revised response format, along with measures of psychological distress (Hospital Anxiety and Depression Scale) and quality of life (Expanded Prostate Cancer Index Composite-short form). Exploratory factor and parallel analyses were undertaken to examine the structure of the revised instrument. Reliability analysis was performed, and convergent and ergent validity were examined using a priori predictions. As with the original scale, a five-factor solution was indicated. Four of the five factors were identical to those reported in the original SNCS-SF34 validation study. Internal consistency was excellent, exceeding 0.8 for all five domains. Consistent with expectations, correlations between SCNS domains and Hospital Anxiety and Depression Scale subscales indicated moderate to large convergent relations (ranging from 0.31-0.67). The SCNS-SF34 with revised response format maintained the same factor structure as the original, with five domains. This analysis demonstrates that the simplified response scale does not adversely affect the psychometric properties of the instrument. The SCNS-SF34 with revised response format is reliable, valid and more acceptable to cancer patients than its predecessor.
Publisher: Springer Science and Business Media LLC
Date: 2013
Publisher: Elsevier BV
Date: 02-2017
DOI: 10.1016/J.EJON.2016.12.001
Abstract: Oncology health professionals (HPs) are increasingly required to care for patients from minority backgrounds. Yet many HPs have not had formal training in how to communicate effectively in culturally erse settings. More information is needed about the challenges that oncology HPs face in communicating with minority patients to inform the content of formal training programs. This qualitative study aimed to identify oncology nurses' and oncologists' in idual experiences and challenges in communicating with patients from minority backgrounds. Thirty-eight oncology HPs (21 oncology nurses, 12 medical oncologists, and 5 radiation oncologists) were interviewed in idually or in focus groups about their experiences communicating with patients from minority backgrounds. The interviews were audio taped and analysed thematically. The majority of participants (82%) reported varying degrees of uncertainty and discomfort regarding working with minority patients, with many barriers to communication encountered. Participants perceived that minority patients received less emotional support than majority group patients. They experienced challenges in balancing beliefs about patient autonomy with cultural differences regarding the role of the family. Strategies employed by participants to facilitate interactions included: modifying speech, taking more time in consultations, rapport building, and using nonverbal techniques. Oncology HPs encounter many linguistic and cultural barriers when communicating with minority patients. They need formal training tailored to developing culturally competent communication. Oncology nurses and oncologists could benefit from formal communication skills training focused upon cultural competence during their career development programs.
Publisher: SAGE Publications
Date: 29-10-2012
Abstract: Health ICT is rapidly gaining popularity among policy makers and health consumers. Specific platforms for use in cancer care are missing. The aim of this pilot study was to: 1) test the feasibility, functionality and usability of a patient-led cancer care web platform: CanCare, in a s le of people undergoing cancer treatment and 2) ascertain if CanCare could enhance communication between patients, family, friends and health professionals. Cancer patients receiving chemotherapy were invited to participate. Data were collected via semi-structured interviews, online surveys and a website usage program. Nine patients with four different types of cancer completed the study. All saw the potential of the website but many found it too complex to use, particularly when unwell post treatment. Many were frustrated by the lack of integration with existing hospital systems and the need to enter relevant data manually. The cancer-specific information tab rated highly and was used extensively. The website used alone did not promote interactions between family and/or health professionals. A patient-led cancer care website has the potential to help patients manage their cancer care but needs to be intuitive to use, integrated into hospital systems and requires significant family/carer and health professional engagement.
Publisher: Wiley
Date: 23-08-2007
DOI: 10.1111/J.1365-2702.2007.01748.X
Abstract: This paper reports on the development and evaluation of a multidisciplinary critical appraisal and research utilization-training programme at one organization with the aim of demonstrating a potential approach to the challenge of ensuring practice is evidence based. Considerable time and attention is devoted to developing and evaluating new clinical innovations. Nevertheless, it is estimated that a quarter of patients continue to receive treatments that are unnecessary or potentially harmful. A cross-sectional qualitative evaluation survey of nurses and allied health staff participating in the training programme. After running the programme twice at this organization we sought to evaluate the impact of the programme. Participants were asked to write answers to open-ended questions to examine personal and professional outcomes of participation. All respondents found the programme to be worthwhile and beneficial to their everyday practice. Importantly, participants reported feeling more confident when discussing clinical issues within the multidisciplinary team. The majority have presented their work via oral presentations or in publications and many have gone on to enroll in higher degrees. A critical appraisal and research utilization programme, as described here, has benefits for clinicians in terms of building confidence, knowledge and skill acquisition and also for the organization in terms of provision of evidence-based care and quality and safety. It successfully addresses commonly reported barriers to research utilization. A programme such as the Clinical Research Fellowship increases clinicians' ability and confidence to generate research questions that are meaningful to practice and then investigate the issue in a rigorous and timely manner.
Publisher: Informa UK Limited
Date: 09-08-2006
Publisher: Elsevier BV
Date: 10-2016
Publisher: Elsevier BV
Date: 12-2017
Publisher: SAGE Publications
Date: 10-2006
Abstract: It is not uncommon for patients with advanced incurable disease to express a desire to hasten their death. Health professionals often have difficulty responding to such statements, and find it challenging to ascertain why these statements are made. Health professionals may struggle to determine whether a ‘desire to die’ statement (DTDS) is about a request for hastened death, a sign of psychosocial distress, or merely a passing comment that is not intended to be heard literally as a death wish. Given the lack of guidelines to assist health professionals with this issue, we have prepared multidisciplinary recommendations for responding to a DTDS, underpinned by key principles of therapeutic communication and a systematic review of empirical literature. Where the relevant literature was lacking, the recommendations were drafted by the authors (clinicians and/ or academics from the following disciplines: nursing, medicine, psychiatry, psychology, sociology, aged care and theology), based on their expert opinion. Multiple drafts of the recommendations were circulated to the authors for refinement until consensus was reached. Strategies for advancing the evidence base for the maturation of guidelines in this area are offered.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 08-2001
DOI: 10.1097/00002820-200108000-00011
Abstract: Australian palliative care services are predominantly community based, with an emphasis on enabling the person to live at home for as long as possible. Home care of the person with advanced cancer receiving palliative care in the community depends largely on the availability of a family caregiver. Family caregivers are required to assess, monitor, and deliver complex therapeutic interventions such as pain and symptom control, including the administration and adjustment of complex medication regimens. This article reports a study of 42 family caregivers providing home care to persons with advanced cancer. This study sought to describe a number of caregiver variables that may influence reactions to caring roles and caregiver well-being. The study found that family caregivers are significantly involved in symptom management, and that they take on almost total responsibility for routine household tasks. In addition, the caregiver role has a negative impact on caregiver health, schedule, anxiety, and energy. However, caregivers find significant meaning in their role and feel relatively well prepared for caregiving. The results of this study support the applicability of the vast international literature on caregiver issues for the Australian setting and suggest the need to move toward development of caregiver-focused nursing interventions.
Publisher: Elsevier BV
Date: 05-2017
DOI: 10.1016/J.PEC.2016.12.009
Abstract: People with cancer can experience psychological distress but do not always desire, or engage with, professional support to assist with managing distress. Interventions that are self-directed or guided by patients may hold promise as they allow patients to engage with interventions as they need. The objective of this review is to describe and appraise the evidence for effectiveness of self-guided interventions that aim to manage psychological distress in people with cancer. A systematic search of Medline, PsychInfo and CINAHL identified 15 relevant papers, reporting on 14 studies. Of the interventions, three studies comprised hard-copy workbooks, six studies used resource packs, four were online resources and one was a brief multimedia resource. One study was adequately powered and demonstrated a positive effect. Almost all interventions required some level of facilitation. Distressed participants may benefit more from interventions. Self-guided interventions represent a potentially efficient way of delivering support for people affected by cancer, however evidence supporting them is lacking. There is a need to generate evidence to understand the impact of self-guided interventions for: i) the ideal delivery point in the disease trajectory, ii) patient groups, iii) intervention content and iv) type and mode of delivery.
Publisher: American Society of Clinical Oncology (ASCO)
Date: 06-2013
Publisher: Springer Singapore
Date: 2016
Publisher: Springer Science and Business Media LLC
Date: 13-06-2016
Publisher: Oxford University Press (OUP)
Date: 15-06-2016
DOI: 10.1634/THEONCOLOGIST.2015-0533
Abstract: Colorectal cancer (CRC) and its treatments can cause distressing sequelae. We conducted a multicenter randomized controlled trial aiming to improve psychological distress, supportive care needs (SCNs), and quality of life (QOL) of patients with CRC. The intervention, called SurvivorCare (SC), comprised educational materials, needs assessment, survivorship care plan, end-of-treatment session, and three follow-up telephone calls. At the end of treatment for stage I–III CRC, eligible patients were randomized 1:1 to usual care (UC) or to UC plus SC. Distress (Brief Symptom Inventory 18), SCNs (Cancer Survivors’ Unmet Needs measure), and QOL (European Organization for Research and Treatment of Cancer [EORTC] QOL questionnaires C30 and EORTC CRC module CR29) were assessed at baseline and at 2 and 6 months (follow-up 1 [FU1] and FU2, respectively). The primary hypothesis was that SC would have a beneficial effect on distress at FU1. The secondary hypotheses were that SC would have a beneficial effect on (a) SCN and QOL at FU1 and on (b) distress, SCNs, and QOL at FU2. A total of 15 items assessed experience of care. Of 221 patients randomly assigned, 4 were ineligible for the study and 1 was lost to FU, leaving 110 in the UC group and 106 in the SC group. Patients’ characteristics included the following: median age, 64 years men, 52% colon cancer, 56% rectal cancer, 35% overlapping sites of disease, 10% stage I disease, 7% stage II, 22% stage III, 71%. Baseline distress and QOL scores were similar to population norms. Between-group differences in distress at FU1 (primary outcome) and at FU2, and SCNs and QOL at FU1 and FU2 were small and nonsignificant. Patients in the SC group were more satisfied with survivorship care than those in the UC group (significant differences on 10 of 15 items). The addition of SC to UC did not have a beneficial effect on distress, SCNs, or QOL outcomes, but patients in the SC group were more satisfied with care.
Publisher: Elsevier BV
Date: 06-2022
Publisher: Springer Science and Business Media LLC
Date: 17-08-2016
DOI: 10.1007/S00520-016-3382-0
Abstract: A stepped-wedge cluster-randomised controlled trial was conducted to evaluate the feasibility and effectiveness of a brief psychosocial intervention for depressed cancer patients, delivered by trained front-line health professionals in routine clinical care. Nine hundred two patients were assessed across four treatment centres which were allocated in random order from control epoch to intervention epoch. Eligible patients had Hospital Anxiety and Depression Scale (HADS) scores of 8 or greater. Of eligible patients, 222 were recruited in control epoch and 247 in intervention epoch. Twenty-seven health professionals (HPs) were trained to deliver the psychosocial intervention consisting of up to four sessions, tailored to patient symptoms and distress. HPs participated in group supervision with a psychiatrist. The primary outcome, analysed by intention to treat, was depression measured with the HADS at 10 weeks after receiving the intervention. At 10-week follow-up, there were no significant differences in HADS score for the 181 patients in control epoch and 177 in intervention epoch (adjusted difference -1.23, 95 % CI -3.81--1.35, p = 0.35). Patients with disease progression who received the intervention experienced significant benefits in unmet practical support needs including care and support, information, and physical and daily living. A brief psychosocial intervention delivered by front-line oncology health professionals is feasible to deliver but is insufficient as a stand-alone treatment for depression in cancer patients. Psychosocial interventions should be targeted to populations most likely to experience benefit.
Publisher: Mark Allen Group
Date: 05-2001
DOI: 10.12968/IJPN.2001.7.5.12634
Abstract: This article reports on a retrospective study of the provision of ‘after-hours’ telephone support by a community palliative care service during 1996 and 1997. Calls received outside of normal office hours were triaged through an inpatient hospice unit located in the same building as the community team. During the study period, 629 patient or carer calls were received, predominantly between 5pm and 11pm. The main reasons cited for using the after-hours service were medication queries, pain, seeking advice from the nurse and anxiety. The triage nurse successfully handled 30% of the calls. The remaining 70% of calls were transferred to the on-call community palliative care nurse, resulting in 251 home visits. Visits were not predicted by call reason, patient living arrangements, diagnosis or clinical problems the patient being close to death or having died was a predominant reason for visiting. It was found, however, that call outcomes could be partly predicted by the identity of the triage nurse. It is argued that the findings of this study raise important issues related to the provision of after-hours palliative care and the training of staff providing triage of calls from patients and families at home.
Publisher: Springer Science and Business Media LLC
Date: 05-02-2013
DOI: 10.1007/S00520-013-1719-5
Abstract: Although patients receive information prior to commencing radiotherapy, they often experience anxiety and distress. We conducted a pilot randomised controlled trial to determine whether a radiation therapist led psycho-educational intervention for breast cancer patients prior to radiotherapy is likely to be effective in reducing radiotherapy-related concerns, patient anxiety and depression. The intervention comprised two face-to-face consultations with a radiation therapist (one prior to radiation planning and the other prior to treatment). Patients completed surveys at baseline, prior to treatment planning and on the first day of treatment. Outcome measures included the Hospital Anxiety and Depression Scale, Radiation Therapy Related Patient Concerns and Radiation Therapy Knowledge Scales. One hundred and twenty two patients completed baseline measures. Fifty-eight patients received usual care, and 64 received the intervention. After the first consultation, patient anxiety was significantly lower in the intervention group (p = 0.048), as were concerns about radiotherapy (p = 0.001). There were no differences between groups for depression. Patient knowledge for the intervention group was higher after the first consultation (p < 0.001). This intervention is likely to be effective in reducing patient anxiety and concerns and increasing knowledge. Future research is required to test this intervention with a larger population.
Publisher: BMJ
Date: 07-2016
Publisher: Elsevier BV
Date: 02-2008
DOI: 10.1016/J.COLEGN.2007.11.002
Abstract: The development of nursing interventions that demonstrate the link between nursing actions and patient outcomes is a high priority for nursing research. The development of intervention research frequently focuses on the methods used to test the intervention while less attention is placed on rigor in intervention development and design. The purpose of this paper is to provide thinking points for researchers considering the development of nursing interventions. The thinking points were developed from the limited literature on this topic in synthesis with the authors own experiences of designing nursing interventions. Adoption of a systematic approach to intervention testing is advocated along with a step-wise intervention development process. This process calls for attention to problem definition, conceptual underpinnings, desired outcomes and measures and evidence-based content along with careful consideration of delivery methods, dose and attention to protecting the integrity of the intervention during testing. The approach advocated will help to ensure that nursing intervention research makes a useful contribution to the development of nursing practice.
Publisher: AMPCo
Date: 30-05-2021
DOI: 10.5694/MJA2.51087
Publisher: Elsevier BV
Date: 06-2013
DOI: 10.1016/J.EJON.2012.10.001
Abstract: To examine nurses' roles in the prevention and management of chemotherapy-induced nausea and vomiting (CINV), and to identify their related educational needs. This was a descriptive cross-sectional study with a self-reported survey completed by 103 oncology nurses caring for and administering chemotherapy to cancer patients in the department of oncology in three Hong Kong public hospitals. The survey was developed to identify key issues pertinent to the role of nurses in managing CINV. Data were collected from the following areas (a) demographics, (b) assessment of CINV, (c) CINV management and (d) barriers and facilitators to good CINV practice. Only a third of respondents performed a CINV assessment before starting chemotherapy, and more than 40% reported that the use of a standardised assessment tool was uncommon. Nearly half recognised that they had inadequate knowledge of different aspects of CINV, but the majority could clearly state the most common pharmacological agents used to treat chemotherapy-induced nausea (88.3%) and vomiting (87.4%). The barriers respondents most frequently encountered in CINV prevention and management were lack of time and a heavy workload. Adopting a standardised CINV assessment tool and management protocol together with further professional training were identified as the major facilitators in improving CINV prevention and management. Respondents perceived their knowledge of CINV prevention and management as inadequate. There is a need to adopt a standardised assessment tool, to develop a management protocol and to introduce further professional training to meet the expanding needs of both patients and nurses.
Publisher: BMJ
Date: 04-06-2013
Publisher: BMJ
Date: 16-07-2015
DOI: 10.1136/BMJSPCARE-2014-000744
Abstract: People with advanced cancer experience bodily change resulting in debilitating functional decline. Although inability to participate in everyday activities (occupation) contributes to profound suffering, limited research has examined the relationship between altered bodily experience (embodiment) and functional ability. The purpose of this study was to better understand the lived experience of functional decline for people with advanced cancer living at home. Indepth interviews were conducted with 10 community dwelling people with advanced cancer about their bodily experiences of functional decline. This study employed a pragmatic qualitative approach, informed by hermeneutic phenomenology. People described living with rapidly disintegrating bodies and how this affected their ability to participate in everyday activities. Analysis identified themes which were evaluated against conceptual frameworks of 'occupation' and 'embodiment'. People experienced a shifting sense of self. They had to continuously reinterpret changing bodies. Previously automatic movements became disjointed and effortful. Simple actions like standing or getting out of bed required increasing concentration. Relentless bodily breakdown disrupted peoples' relationship with time, hindering their ability, but not their desire, to participate in everyday activities. Contending with this deterioration is the work of adaptation to functional decline at the end-of-life. This study highlights the role active participation in everyday activities plays in mediating adjustment to functional decline. These findings challenge us to look beyond palliation of physical symptoms and psychospiritual care as ends in themselves. Symptom control and palliation should be viewed as mechanisms to optimise active participation in essential and valued activities.
Publisher: Hindawi Limited
Date: 11-09-2017
DOI: 10.1111/ECC.12758
Abstract: This study aimed to ascertain the systemic barriers encountered by oncology health professionals (HPs) working with patients from ethnic minorities to guide the development of a communication skills training programme. Twelve medical and five radiation oncologists and 21 oncology nurses were invited to participate in this qualitative study. Participants were interviewed in idually or in a focus group about their experiences working with people from minority backgrounds. All interviews were transcribed verbatim and analysed thematically. HPs encountered language and communication barriers in their interactions with patients and their families, which were perceived to impact negatively on the quality and amount of information and support provided. There was a shortage of, and poor processes for engaging, interpreters and some HPs were concerned about the accuracy of interpretation. HPs expressed a need for training in cultural awareness and communication skills with a preference for face-to-face delivery. A lack of funding, a culture of "learning on the job", and time constraints were systemic barriers to training. Oncologists and oncology nurses encounter complex challenges in clinical interactions with minority patients and their families, including difficulties working with interpreters. Formal training programmes targeted to the development of culturally competent communication skills are required.
Publisher: Mark Allen Group
Date: 09-2002
DOI: 10.12968/IJPN.2002.8.9.10688
Abstract: This article presents the findings of a study that explored documentation surrounding the end-of-life care of children with cancer. An in-depth history audit of 18 children with cancer, who died from disease progression at a single tertiary paediatric centre during 1999, was performed to explore the extent and the ways in which the shift from cure to palliation was reflected in the child’S medical record. The study found that while physical aspects of care were documented there was little evidence of the human-to-human aspects of care or processes of decision making when cure was no longer a possibility. Relapse and disease progression were identified as critical junctures for families and health professionals and an important area for future research. Further, the medical records documented ill-defined periods of palliation, with the child’S approaching death appearing as a gradual awareness rather than a distinct shift in goals of care from cure to palliation.
Publisher: Wiley
Date: 06-1999
Publisher: Wiley
Date: 21-01-2011
DOI: 10.1002/PON.1902
Abstract: The Needs Assessment for Advanced Cancer Patients (NA-ACP) is a 132-item self-report questionnaire designed to assess the seven needs domains of patients with advanced, incurable cancer. This study aimed to evaluate the short derivative form of that questionnaire with advanced lung cancer patients. Item factor loadings, item test-retest data and response distributions were used to retain or reject items from the original NA-ACP scale. This resulted in 38 items being maintained, preserving the original subscales. The response scale was simplified following feedback from patients. 108 people with advanced lung cancer completed the shortened NA-ALCP along with measures of psychological distress (HADS, DT) and quality of life (EORTC QLQ-C30). A-priori predictions were made for ergent and convergent validity. Internal consistency coefficients were satisfactory for six of seven subscales, range 0.71-0.95. Correlations between NA-ALCP and HADS, DT and EORTC-QLQ-C30 provided support for 11 of the 22 ergent (r = 0.13-0.27) and convergent predictions (r = 0.45-0.71). Subscales of the NA-ALCP demonstrated internal reliability consistent with the original scale. Results provided supporting evidence for ergent and convergent validity. This study indicates that the NA-ALCP is psychometrically robust, easily understood and one-quarter the length of the original version.
Publisher: Wiley
Date: 25-04-2012
DOI: 10.1111/J.1743-7563.2012.01520.X
Abstract: To describe the development of the content and pilot testing of a radiation therapist-led educational intervention for breast cancer patients about to commence radiotherapy. Pilot testing consisted of testing the intervention for appropriateness, feasibility and acceptance. A tailored intervention consisting of two face-to-face meetings with a radiation therapist (one before radiation planning, the other before treatment) was developed using Level I evidence for preparing patients for potentially threatening procedures. Training of intervention radiation therapists consisted of two communication skills workshops. Radiation therapists' consultations were tape-recorded and analyzed. The feasibility of the intervention was assessed by response rates and feedback from patients and radiation therapists. Patients completed surveys at baseline and following each intervention delivery. The main outcome measures were anxiety and depression, patient concerns and knowledge about radiotherapy. Response rates were considered acceptable. Twelve patients were enrolled and completed baseline measures. Nine patients completed follow-up measures following the second consultation. Preliminary results showed a trend for a decrease in anxiety and depression levels following the first consultation. There was also a decrease in concerns about radiotherapy and an increase in patients' knowledge. The instruments showed variability at baseline and discriminated between different responses over time. Radiation therapists adhered to providing the interventions. Interviews with radiation therapists and patients demonstrated that the intervention was feasible and acceptable. This pilot study demonstrated that this new intervention is both feasible and acceptable to radiation therapists and patients. The intervention is now being assessed using a randomized controlled trial.
Publisher: Elsevier BV
Date: 05-2004
Publisher: AMPCo
Date: 10-2014
DOI: 10.5694/MJA14.00365
Abstract: To investigate opportunities to reduce lung cancer mortality after diagnosis of localised non-small cell lung cancer (NSCLC) in New South Wales through surgical resection. In this cohort study, resection rates and lung cancer mortality risk were explored using multivariate logistic regression and competing risk regression, respectively. Data for 3040 patients were extracted from the NSW Central Cancer Registry for the diagnostic period 1 January 2003 to 31 December 2007. Subset analyses for patients at low surgical risk indicated resection rates and outcomes under ideal circumstances. Resection rates and lung cancer mortality. The resection rate in NSW was estimated to be between 38% and 43%, peaking at 59% by local health district (LHD) of residence. Not having a resection was associated with older age, lower socioeconomic status, lack of private health insurance, and residence by LHD. Adjusted 5-year cumulated probabilities of death were 76% in absence of resection, 30% for wedge resection, 18% for segmental resection, 22% for lobectomy and 45% for pneumonectomy. Of 255 "low surgical risk" patients, 71% had a resection. Those not receiving a resection had a higher probability of death (adjusted subhazard ratio, 14.1 95% CI, 7.2-27.5). If the low overall resection rate of 38%-43% in NSW were increased to 59% (the highest LHD resection rate), the proportion of all patients with localised NSCLC dying of NSCLC in the 5 years from diagnosis would decrease by about 10%, based on differences in probabilities of death by resection estimated in this study. Potential exists to reduce deaths from NSCLC in NSW through increased resection.
Publisher: American Society of Clinical Oncology (ASCO)
Date: 12-2008
Abstract: Adverse effects of chemotherapy can be severe and can have a significant impact on a person's quality of life. With chemotherapy treatment increasingly administered in the ambulatory setting, there is a need for patients to be informed about effective self-care strategies to manage treatment adverse effects. Advice for patients needs to be based on evidence. This systematic review provides an overview of the intervention research in this area as well as an effectiveness review of nonpharmacologic (self-care) strategies evaluated in high-quality randomized controlled trials (RCTs). An extensive literature search was conducted to identify RCTs relating to self-care strategies for reducing nausea/vomiting, constipation, diarrhea, fatigue, hair loss, or mucositis. Relevant studies published in peer-reviewed journals between 1980 and August 2007 were included. Study characteristics, results and methodologic quality were examined. High-quality RCTs were further analyzed to establish the effectiveness of specific self-care strategies. The search identified 77 RCTs. Findings from RCTs of reasonable quality provide limited support for cognitive distraction, exercise, hypnosis, relaxation, and systematic desensitization to reduce nausea and vomiting, psycho-education for fatigue, and scalp cooling to reduce hair loss. Although some strategies seem promising, the quality of the RCTs was generally quite low, making it difficult to draw conclusions about the effectiveness of self-care strategies. Future studies require better design and reporting of methodologic issues to establish evidence-based self-care recommendations for people receiving chemotherapy.
Publisher: Springer Science and Business Media LLC
Date: 02-2006
DOI: 10.1007/S00520-005-0909-1
Abstract: Based on a theoretical framework, we developed an audiovisual resource to promote self-management of eight common chemotherapy side-effects. A patient needs analysis identified content domains, best evidence for preparing patients for threatening medical procedures and a systematic review of effective self-care strategies informed script content. Patients and health professionals were invited to complete a written evaluation of the video. A 25-min video was produced. Fifty health professionals and 37 patients completed the evaluation. All considered the video informative and easy to understand. The majority believed the video would reduce anxiety and help patients prepare for chemotherapy. Underpinned by a robust theoretical framework, we have developed an evidence-based resource that is perceived by both patients and health professionals as likely to enhance preparedness for chemotherapy.
Publisher: JMIR Publications Inc.
Date: 23-04-2023
Abstract: he past decade saw remarkable advances in cancer care, treatment and outcomes, but the benefits were not experienced equally by all. Disparities are largely driven by social determinants of health and associated structural barriers. Specialist cancer nurses can ameliorate inequity of opportunity for optimal care, treatment and outcomes through timely screening, assessment and intervention. We designed a nursing complexity checklist (the Checklist) to support these activities, with the ultimate goal of reducing disparities in opportunity of access for people diagnosed with cancer. The aim of this study is to understand the clinical utility of the Checklist including issues affecting adoption into routine practice. rimary objectives are to assess the appropriateness, acceptability, and practicability of the Checklist from the perspective of cancer patients and specialist nurses core aspects of each dimension were selected from Smart’s multi-dimensional model of clinical utility. Secondary objectives focus on two aspects of the practicability dimension including a preliminary investigation of the predictive value of the Checklist and concordance between specific checklist items and patient-reported outcome measures (PROMs). p to sixty newly diagnosed cancer patients and ten specialist nurses will be recruited from a specialist cancer centre into this prospective mixed-methods case series study. The Checklist will be completed by a specialist nurse with patient participants. Within two weeks of Checklist completion, patients will complete five PROMs with established psychometric properties that correspond to specific checklist items and an in idual semi-structured interview to explore its acceptability. Interviews with specialist nurses will occur 12 and 24 weeks after they first complete a checklist to explore multiple aspects of clinical utility including barriers and facilitators to effective implementation. Data regarding planned and unplanned patient service-use will be collected from patient follow-up interviews at 12 weeks and the electronic medical record (EMR) at 24 weeks after Checklist completion. Descriptive statistics will be used to summarise operational, checklist and EMR data. Contingency tables and conditional probabilities will be used to explore the predictive value of the Checklist. Descriptive statistics, Cohen’s d/U3 and plots will be used to explore the relationship between specific checklist items and relevant PROMs. Qualitative data will be analysed using a content analysis approach. his study was approved by the institution’s ethics committee. The enrolment period commenced May 2022 and ended November 2022. Thirty-seven cancer patients and seven specialist cancer nurses were recruited in this time. Data collection is scheduled for completion at the end of May 2023. his prospective mixed-methods case series study will evaluate the clinical utility of a nursing complexity checklist. It will also provide preliminary evidence on its predictive value and information to support its seamless implementation into everyday practice including, but not limited to, possible revisions to the Checklist, instructions and training for relevant personnel.
Publisher: American Society of Clinical Oncology (ASCO)
Date: 12-2021
DOI: 10.1200/GO.20.00607
Publisher: AMPCo
Date: 06-2016
DOI: 10.5694/MJA16.00182
Publisher: Mark Allen Group
Date: 12-2001
DOI: 10.12968/IJPN.2001.7.12.9288
Abstract: I have previously argued that palliative care is in danger of suffering from ideological stagnation (Aranda, 1998). By this I meant that the philosophy of palliative care had become so enshrined in rhetoric that practitioners are able to claim that they provide whole person, family-centred and multidisciplinary care, while failing to explore the limits to which this is achieved within the context of contemporary health-care delivery. The words of palliative care philosophy role off the tongue but we rarely challenge what we do. However, in today’s health-care world, and with increasing governmental funding of palliative care services, demands to be accountable for the outcomes of palliative care are growing. The challenge is no longer one of proving the place of palliative care, but rather of demonstrating the effect of our interventions so that they can be taken up more broadly in health care. Some of the forces preventing this I have labelled the tyrannies of palliative care. The word tyranny means oppressive action or behaviour. In this context though it refers to the ways in which our behaviours limit the extent to which palliative care can be self-critical and reflective. The three tyrannies I have identified are not exhaustive but can perhaps begin us on a process of self-critique that will be essential to our continued growth as an integral part of contemporary health care.
Publisher: SAGE Publications
Date: 10-2006
Abstract: Purpose: Patients’ desire for hastened death within the context of advanced disease and palliative care is a controversial topic, frequently discussed in the international literature. Much of the discussion has focused on opinion and debate about ethical matters related to hastened death. Not many research studies seem to have specifically targeted why palliative care patients may desire hastened death, and few have focused on clinical guidelines for responding to such requests. Methods: Using a systematic literature review process, we evaluated the research evidence related to the reasons patients express a desire for a hastened death, and the quality of clinical guidelines in this area. Results: Thirty-five research studies met the inclusion criteria related to reasons associated with a desire for hastened death. The factors associated with a desire to die were often complex and multifactorial however, psychological, existential and social reasons seem to be more prominent than those directly related to physical symptoms, such as pain. Much of the evidence supporting the reasons for these statements is based on: (a) patients’ perceptions of how they may feel in the future, and (b) health professionals’ and families’ interpretations of why desire to die statements may have been made. Several publications provided expert opinion for responding to requests for physician-assisted suicide and euthanasia. In keeping with this limited research base, there is a lack of evidence-based guidelines for clinical care that addresses the desire to die among terminally ill patients. Most literature has focused on discipline specific responses, with minimal exploration of how clinicians might respond initially to a statement from a patient regarding a desire to die. Conclusions: In order to advance understanding of the complex issue of desire for hastened death in the context of palliative care, research should focus on studies with patients who have actually made a desire to die statement and the development of guidelines to help health professionals respond. Direction for research in this area is described.
Publisher: Informa UK Limited
Date: 11-02-2009
DOI: 10.1080/07347330802616100
Abstract: This study aimed to develop and implement a nurse-led psychoeducational group program for men receiving radiotherapy for prostate cancer. These groups are part of a larger multidisciplinary care intervention, which is designed to enhance patient involvement in care. The manual for the groups was developed using a literature review and expert opinion from a multidisciplinary team consisting of radiation oncologists, urology nurses, behavioral scientists, psychologists, radiation therapists, and consumers. The group was pilot tested with 10 participants and further refined based on patient and facilitator feedback. The final program consisted of four, 1-hour, psychoeducational group sessions, with modules covering anatomy, treatment side effects, physical/lifestyle/ emotional impacts of prostate cancer, sexuality and communication, and survivorship delivered at pretreatment, midtreatment, end of treatment, and posttreatment. The modular design of this intervention is innovative in that men in the group can collectively nominate which modules they wish to focus on. Feedback from patients and facilitators was positive with minimal changes made to the manual, apart from session 4 that required expansion to permit group members to have greater choice over the content. Participants endorsed the psychoeducational groups as being useful, an appropriate length, and addressing their issues of concern. Further testing of the psychoeducational groups is currently being undertaken as part of a larger randomized controlled trial of the multidisciplinary care intervention.
Publisher: Mary Ann Liebert Inc
Date: 02-2004
DOI: 10.1089/109662104322737214
Abstract: Caring for a dying relative is demanding, and family caregivers have acknowledged many unmet needs associated with their caregiver role. Consistently, caregivers of dying patients with cancer have reported that they need more support and information from health care professionals. Moreover, a number of palliative care clinicians and researchers have called for interventions to enhance the support offered to family caregivers. However, before researchers can develop and test palliative care interventions directed to families, it is important to identify barriers that may confront health care professionals with regard to the provision of supportive family care. For new interventions to be feasible they must be applicable within the constraints of current palliative care service delivery environments. This paper provides an account of issues that may impinge on optimal transference of supportive strategies from health care professionals to family caregivers of patients receiving palliative care. By acknowledging these barriers to supportive care, researchers and health care professionals can begin to design and implement interventions that are clinically relevant and more likely to be effective.
Publisher: Wiley
Date: 06-2000
Publisher: Springer Science and Business Media LLC
Date: 16-05-2009
DOI: 10.1007/S00520-008-0448-7
Abstract: A diagnosis of cancer can have a profound impact on the physical, emotional, psychological, social and spiritual areas of a person's life. Supportive care services are directed towards this full range of issues associated with cancer. Identification of need is the first step in meeting supportive care concerns, but there is a lack of tools and processes regularly used in clinical practice. This article reports the first steps in the development of a supportive needs screening tool appropriate for use in an oncology outpatient setting. A review of the literature was undertaken, and a draft tool developed using a process of item reduction. A small pre-test followed by a pilot test with 87 patients attending Peter MacCallum Cancer Centre, Melbourne Australia was undertaken. Evaluation to identify usability and acceptability in clinical practice included descriptive statistics to profile patient needs and referrals generated by the supportive needs screening tool (SNST), interviews with a small s le of participants and surveys completed by staff. The SNST was developed with 41 questions, the majority requiring a yes/no response. From the tool, a total of 1,085 needs were identified (mean = 12 needs atient). A total of 264 referrals were generated, with 72% of patients receiving at least one referral. Patients and staff reported high acceptability. The SNST has face validity and demonstrated usability in an ambulatory care oncology stetting, as first steps in instrument development. Further testing of reliability and validity are being undertaken.
Publisher: BMJ
Date: 03-05-2010
Abstract: Clinician gate-keeping is the process whereby healthcare providers prevent access to eligible patients for research recruitment. This paper contends that clinician gate-keeping violates three principles that underpin international ethical guidelines: respect for persons or autonomy beneficence or a favourable balance of risks and potential benefits and justice or a fair distribution of the benefits and burdens of research. In order to stimulate further research and debate, three possible strategies are also presented to eliminate gate-keeping: partnership with professional researchers collaborative research design and clinician education.
Publisher: Elsevier BV
Date: 12-2015
Publisher: Springer Science and Business Media LLC
Date: 09-01-2015
DOI: 10.1007/S11764-014-0422-Y
Abstract: This study investigated psychological morbidity, quality of life (QoL), colorectal cancer (CRC)-specific symptoms and supportive care needs in a CRC population at the end of treatment (EOT). CRC survivors (n = 152) completed a post-treatment baseline questionnaire as part of a multisite supportive care randomised controlled trial (SurvivorCare). CRC survivors had completed treatment with curative intent within 0 to 6 months. Measures are as follows: Brief Symptom Inventory 18 (BSI-18) (psychological morbidity), EORTC QLQ-C30 and QLQ-CR29 (QoL and CRC-specific symptoms and problems) and Cancer Survivors' Unmet Needs (CaSUN) measure with a simplified response format (unmet needs). Linear regression models were used to compare participants' QoL with a general population s le. Correlation analysis examined associations between psychological morbidity, QoL and CRC-specific symptoms and problems. Average participant age was 64 years, and 51% were male. The majority (68%) had stage 3 disease. In comparison to population norms, CRC survivors had lower depression and anxiety scores (47.4 and 45.6, respectively) but higher somatisation, and lower role, cognitive and social functioning (p < 0.001). CRC survivors had higher fatigue, nausea/vomiting, appetite loss, diarrhoea and financial problems (all p < 0.001), as well as pain (p = 0.002) and constipation (p = 0.019). CRC-specific psychological scores were positively correlated with all three BSI domain scores, and pain and fatigue symptom scores on the QLQ-C30 while negatively correlated with all five functional scales of the QLQ-C30. CRC survivors reported good mental health at EOT. Role and social functioning were impaired compared to population norms, possibly related to physical symptoms. Findings may help guide consultations with patients and inform the design of more tailored supportive care interventions. ACTRN12610000207011.
Publisher: Springer Science and Business Media LLC
Date: 19-08-2008
Publisher: Wiley
Date: 26-02-2016
DOI: 10.1111/AJCO.12479
Publisher: Cambridge University Press (CUP)
Date: 19-02-2008
DOI: 10.1017/S1478951508000096
Abstract: In the clinical setting of cancer, meaning may well have a central role in the life changes the illness experience brings about. As health care professionals working with people with life-threatening illness, we are exposed to one of the major turning points in life and the ways people confront this transition. Meaning can assist coping by offering a framework, perspective, and counterbalance to the challenge of illness. However, the absence of meaning can be a precursor to profound despair. This article brings together the clinical implications of two studies conducted by the authors that explored the role of meaning in adjustment to cancer, presenting a theoretical understanding of the experience of meaning in cancer and identifying some potential approaches to intervention. Our findings point to some specific goals of care as well as a number of therapeutic modalities aimed to meet these goals. We examine four goals of care—acknowledging suffering, encouraging a search for meaning, strengthening connection with others, and ensuring optimal physical care—as foundational in any clinical approach and then examine the key models of therapy that assist the clinician in pursuing these goals. Our aim is to create an integrated approach to care provision that locates meaning centrally in any patient's adaptation.
Publisher: Hindawi Limited
Date: 25-01-2010
DOI: 10.1111/J.1365-2354.2009.01105.X
Abstract: This review examined whether the increased attention on multidisciplinary care (MDC) in cancer over the last 10 years has been underpinned by an increase in methodologically vigorous intervention research in this field. Electronic search of Medline and CINAHL databases. This review examined whether the proportion of (1) data-based and (2) intervention research meeting Cochrane Effective Practice and Organisation of Care (EPOC) criteria increased between two time periods (1997-2001 and 2002-2006). Papers meeting the following inclusion criteria were identified: relevant to MDC for cancer patients included the term 'multidisciplinary' in the abstract published in English published between 1997 and 2006. The proportion of data-based papers did not increase over time, nor did the proportion of intervention papers using EPOC-accepted designs. Only three intervention studies using EPOC-accepted designs were identified, all in the later time period. MDC is widely advocated in cancer care. This review indicates a pressing need to focus attention on the development of rigorous intervention research. Such research should answer important questions such as which models of MDC are most effective, for which outcomes and for which patients.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 03-2016
Publisher: Wiley
Date: 07-03-2019
DOI: 10.1002/PON.5018
Start Date: 2012
End Date: 2015
Funder: Australian Research Council
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End Date: 2010
Funder: Canadian Institutes of Health Research
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End Date: 2006
Funder: National Health and Medical Research Council
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End Date: 2016
Funder: National Health and Medical Research Council
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End Date: 2007
Funder: National Health and Medical Research Council
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End Date: 2015
Funder: Australian Research Council
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End Date: 2017
Funder: National Health and Medical Research Council
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End Date: 2010
Funder: National Health and Medical Research Council
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End Date: 2010
Funder: National Health and Medical Research Council
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End Date: 2007
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2014
End Date: 2018
Funder: National Health and Medical Research Council
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