Nursing - Research Publications
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ItemValidation of administrative hospital data for identifying incident pancreatic and periampullary cancer cases: a population-based study using linked cancer registry and administrative hospital data in New South Wales, Australia(BMJ PUBLISHING GROUP, 2016)OBJECTIVES: Informing cancer service delivery with timely and accurate data is essential to cancer control activities and health system monitoring. This study aimed to assess the validity of ascertaining incident cases and resection use for pancreatic and periampullary cancers from linked administrative hospital data, compared with data from a cancer registry (the 'gold standard'). DESIGN, SETTING AND PARTICIPANTS: Analysis of linked statutory population-based cancer registry data and administrative hospital data for adults (aged ≥18 years) with a pancreatic or periampullary cancer case diagnosed during 2005-2009 or a hospital admission for these cancers between 2005 and 2013 in New South Wales, Australia. METHODS: The sensitivity and positive predictive value (PPV) of pancreatic and periampullary cancer case ascertainment from hospital admission data were calculated for the 2005-2009 period through comparison with registry data. We examined the effect of the look-back period to distinguish incident cancer cases from prevalent cancer cases from hospital admission data using 2009 and 2013 as index years. RESULTS: Sensitivity of case ascertainment from the hospital data was 87.5% (4322/4939), with higher sensitivity when the cancer was resected (97.9%, 715/730) and for pancreatic cancers (88.6%, 3733/4211). Sensitivity was lower in regional (83.3%) and remote (85.7%) areas, particularly in areas with interstate outflow of patients for treatment, and for cases notified to the registry by death certificate only (9.6%). The PPV for the identification of incident cases was 82.0% (4322/5272). A 2-year look-back period distinguished the majority (98%) of incident cases from prevalent cases in linked hospital data. CONCLUSIONS: Pancreatic and periampullary cancer cases and resection use can be ascertained from linked hospital admission data with sufficient validity for informing aspects of health service delivery and system-level monitoring. Limited tumour clinical information and variation in case ascertainment across population subgroups are limitations of hospital-derived cancer incidence data when compared with population cancer registries.
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ItemKnowledge of the signs and symptoms and risk factors of lung cancer in Australia: mixed methods study(BMC, 2016-06-13)BACKGROUND: Lung cancer is the leading cause of cancer death in Australia. There is potential that health promotion about the risks and warning signs of lung cancer could be used to reduce delays in symptom presentation when symptoms are first detected. This study investigated knowledge, attitudes and beliefs which might impact help-seeking behaviour and could provide insight into possible public health interventions in New South Wales (NSW). METHODS: A convergent mixed method study design was used wherein data from 16 qualitative focus groups of residents (40+ years), purposefully recruited and stratified by smoking status, age and geography (metropolitan/regional), were compared with a CATI administered population-wide telephone survey (n = 1,000) using the Cancer Research UK cancer awareness measure (LungCAM). Qualitative findings were analysed thematically using NVIVO. Logistic regression analysis was used to investigate predictors of symptom knowledge in STATA. Findings were integrated using triangulation techniques. RESULTS: Across focus groups, haemoptysis was the only symptom creating a sense of medical urgency. Life experiences evoked a 'wait and see' attitude to any health deterioration. Perceived risk was low amongst those at risk with current smokers preferring to deny their risk while former smokers were generally unaware of any ongoing risk. The quantitative sample consisted of females (62 %), 40-65 years (53 %), low SES (53 %), former (46 %) and current smokers (14 %). In quantitative findings, haemoptysis and dyspnoea were the most recognised symptoms across the sample population. Age (<65 years), sex (female) and high socio-economic status contributed to a higher recognition of symptoms. Smoking was recognised as a cause of lung cancer, yet ever-smokers were less likely to recognise the risk of lung cancer due to second-hand smoke (OR 0.7 95 % CI 0.5-0.9). CONCLUSION: While there was some recognition of risk factors and symptoms indicative of lung cancer, there was disparity across the sample population. The qualitative findings also suggest that knowledge may not lead to earlier presentation; a lack of urgency about symptoms considered trivial, and smoking-related barriers such as stigma may also contribute to time delays in presentation. Public health interventions may be required to increase awareness of risk and emphasise the importance of seeking medical attention for ongoing symptoms.
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ItemPerspectives of oncology nurses and oncologists regarding barriers to working with patients from a minority background: Systemic issues and working with interpreters(WILEY, 2018-03)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 individually 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.
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ItemInterventions to improve patient understanding of cancer clinical trial participation: a systematic review(WILEY, 2017-03)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.
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ItemNo Preview AvailableSelf-guided interventions for managing psychological distress in people with cancer - A systematic review(ELSEVIER IRELAND LTD, 2017-05)OBJECTIVE: 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. METHODS: A systematic search of Medline, PsychInfo and CINAHL identified 15 relevant papers, reporting on 14 studies. RESULTS: 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. CONCLUSION: Self-guided interventions represent a potentially efficient way of delivering support for people affected by cancer, however evidence supporting them is lacking. PRACTICE IMPLICATIONS: 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.
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ItemRenewed cervical screening: what the early results tell us(WILEY, 2019-08)
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ItemAssessing the cost-effectiveness of RT Prepare: A radiation therapist-delivered intervention for reducing psychological distress prior to radiotherapy(WILEY, 2019-05)OBJECTIVE: To determine the cost-effectiveness of RT Prepare in reducing breast cancer patients' psychological distress before treatment, compared with usual care. METHODS: 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. RESULTS: 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. CONCLUSION: 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.
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ItemIdentifying essential information to support patient decision-making regarding participation in cancer clinical trials: A Delphi study(WILEY, 2018-11)PURPOSES: This research set out to contribute to ongoing efforts to improve the quality of informed consent information provided to patients by specifically focusing on establishing consensus with regard to essential information to enhance the informed consent process. DESIGN AND METHODS: A Delphi consensus method was used to conduct three rounds of online surveys. Five groups of experts directly or indirectly involved in the informed consent process were invited to participate: patients, family members/friends, physicians, other health professionals and other key informants, including ethicists, contract research staff and pharmaceutical company staff. FINDINGS: Of 156 eligible participants, 101 participants (64.7%) completed all three rounds. In round 1, 994 information items were reported and generated into 74 statements. These were grouped under eight headings essential to the informed consent process. In rounds 2 and 3, the list was reduced to 15 statements representing consensus on essential information to be included in a summarised patient information document to support decision-making regarding trial participation. Risks and discomforts, participation requirements and trial governance were identified as important considerations. CONCLUSIONS: The 15 essential statements identified in this study could be used as components of a summarised information sheet given to potential cancer clinical trial participants, as an adjunct to the informed consent process. A robust evaluation of the impact of these statements on the quality of the informed consent process is needed.
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ItemExperiences and consequences of altered taste, flavour and food hedonics during chemotherapy treatment(SPRINGER, 2012-11)PURPOSE: 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. METHODS: This study utilised a grounded theory research design. Purposeful sampling 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. RESULTS: 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. CONCLUSIONS: '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.
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ItemShould women aged 70-74 be invited to participate in screening mammography? A report on two Australian community juries(BMJ PUBLISHING GROUP, 2018-06)OBJECTIVE: To elicit informed views from Australian women aged 70-74 regarding the acceptability of ceasing to invite women their age to participate in government-funded mammography screening (BreastScreen). DESIGN: Two community juries held in 2017. SETTING: Greater Sydney, a metropolis of 4.5 million people in New South Wales, Australia. PARTICIPANTS: 34 women aged 70-74 with no personal history of breast cancer, recruited by random digit dialling and previously randomly recruited list-based samples. MAIN OUTCOMES AND MEASURES: Jury verdict and rationale in response to structured questions. We transcribed audio-recorded jury proceedings and identified central reasons for the jury's decision. RESULTS: The women's average age was 71.5 years. Participants were of diverse sociocultural backgrounds, with the sample designed to include women of lower levels of educational attainment. Both juries concluded by majority verdict (16-2 and 10-6) that BreastScreen should continue to send invitations and promote screening to their age group. Reasons given for the majority position include: (1) sending the invitations shows that society still cares about older women, empowers them to access preventive health services and recognises increasing and varied life expectancy; (2) screening provides women with information that enables choice and (3) if experts cannot agree, the conservative approach is to maintain the status quo until the evidence is clear. Reasons for the minority position were the potential for harms through overdiagnosis and misallocation of scarce health resources. CONCLUSIONS: Preventive programmes such as mammography screening are likely to have significant symbolic value once they are socially embedded. Arguments for programme de-implementation emphasising declining benefit because of limited life expectancy and the risks of overdiagnosis seem unlikely to resonate with healthy older women. In situations where there is no consensus among experts on the value of established screening programmes, people may strongly prefer receiving information about their health and having the opportunity make their own choices.