General Practice and Primary Care - Research Publications
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ItemRecruiting primary care physicians to qualitative research: Experiences and recommendations from a childhood cancer survivorship study(WILEY, 2018-01)BACKGROUND: Primary care physicians (PCPs) are essential for healthcare delivery but can be difficult to recruit to health research. Low response rates may impact the quality and value of data collected. This paper outlines participant and study design factors associated with increased response rates among PCPs invited to participate in a qualitative study at Sydney Children's Hospital, Australia. PROCEDURE: We invited 160 PCPs by post, who were nominated by their childhood cancer patients in a survey study. We followed-up by telephone, email, or fax 2 weeks later. RESULTS: Without any follow-up, 32 PCPs opted in to the study. With follow-up, a further 42 PCPs opted in, with email appearing to be the most effective method, yielding a total of 74 PCPs opting in (46.3%). We reached data saturation after 51 interviews. On average, it took 34.6 days from mail-out to interview completion. Nonrespondents were more likely to be male (P = 0.013). No survivor-related factors significantly influenced PCPs' likelihood of participating. Almost double the number of interviews were successfully completed if scheduled via email versus phone. Those requiring no follow-up did not differ significantly to late respondents in demographic/survivor-related characteristics. CONCLUSION: PCP factors associated with higher opt in rates, and early responses, may be of interest to others considering engaging PCPs and/or their patients in cancer-related research, particularly qualitative or mixed-methods studies. Study resources may be best allocated to email follow-up, incentives, and personalization of study documents linking PCPs to patients. These efforts may improve PCP participation and the representativeness of study findings.
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ItemThe Victorian Comprehensive Cancer Centre lung cancer clinical audit: collecting the UK National Lung Cancer Audit data from hospitals in Australia(WILEY, 2019-08)BACKGROUND: Clinical audit may improve practice in cancer service provision. The UK National Lung Cancer Audit (NLCA) collects data for all new cases of thoracic cancers. AIM: To collect similar data for our Victorian patients from six hospitals within the Victorian Comprehensive Cancer Centre and associated Western and Central Melbourne Integrated Cancer Service. METHODS: We conducted a retrospective audit of all newly diagnosed patients with lung cancer and mesothelioma in 2013 across the six Victorian Comprehensive Cancer Centre/Western and Central Melbourne Integrated Cancer Service hospitals. The objectives were to adapt the NLCA data set for use in the Australian context, to analyse the findings using descriptive statistics and to determine feasibility of implementing a routine, ongoing audit similar to that in the UK. Individual data items were adapted from the NLCA by an expert steering committee. Data were collated from the Victorian Cancer Registry, Victorian Admitted Episodes Dataset and individual hospital databases. Individual medical records were audited for missing data. RESULTS: Eight hundred and forty-five patients were diagnosed across the sites in 2013. Most were aged 65-80 (55%) and were male (62%). Most had non-small-cell lung cancer (81%) with 9% diagnosed with small cell lung cancer and 2% with mesothelioma. Data completeness varied significantly between fields. For those with higher levels of completeness, headline indicators of clinical care were comparable with NLCA data. The Victorian population seem to lack access to specialist lung cancer nurse services. CONCLUSION: Lung cancer care at participating hospitals appeared to be comparable with the UK in 2013. In future, prospective data collection should be harmonised across sites and correlated with survival outcomes. One area of concern was a lack of documented access to specialist nursing services.
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ItemPaediatric surgery for childhood cancer: Lasting experiences and needs of children and parents.(Hindawi Limited, 2019-09)OBJECTIVE: Surgery for paediatric cancer presents many stresses on patients and families. The authors aimed to understand the long-term impact of childhood cancer surgery on survivors and parents. METHODS: The study recruited participants from 11 Australia/New Zealand hospitals for telephone interviews. The authors used descriptive statistics to analyse participants' quantitative distress ratings and conducted thematic analysis of shared surgical experiences and needs. RESULTS: Of 32 participants (n = 17 survivors, n = 15 parents), survivors' mean age at surgery was 6.9 (SD = 5.17) and parents' children were 2.1 years old (SD = 1.41) at time of surgery. Survivors had surgery on average 15.2 years ago (SD = 6.72) and parents' children 11.5 years ago (SD = 3.94). Parents and survivors rated surgery as highly distressing. Pre-operatively, survivors recalled experiencing fear and pain mainly associated with pre-operative procedures. Post-operatively, survivors reported immobility and some lasting behavioural disturbances. Parents described pre- and intra-operative anxiety and stress and some lasting post-operative psychological disturbances. Experiences appeared to improve with clear/consistent communication from hospital staff, proximity to hospital, and with support for parents and children post-operatively. CONCLUSIONS: Surgical treatment for childhood cancer can have a lasting impact for survivors and parents. Better information provision may improve families' surgical experience whilst reducing anxiety, distress and physical discomfort.
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ItemDo cognitive heuristics underpin symptom appraisal for symptoms of cancer?: A secondary qualitative analysis across seven cancers(WILEY, 2019-05)OBJECTIVES: To explore the evidence for cognitive heuristics or "rules of thumb" used within patients' reports of symptom appraisal and decisions to seek help for symptoms of cancer. METHODS: A secondary analysis of interviews from existing studies that explored symptom appraisal in patients who had sought help for potential symptoms of cancer. Transcripts from n = 50 in-depth interviews with patients referred with symptoms suspicious of cancer (pancreas, colorectal, oral, lung, melanoma, breast, and prostate) were re-analysed using a deductive thematic approach underpinned by the heuristics outlined in the Common Sense Model of Illness Self-regulation as set within the Model of Pathways to Treatment. RESULTS: The most dominant heuristic in patient reports was the Rate of change rule (ie, symptoms that are worsening, increasing, or have a sudden onset [rather than improving, stable or decreasing in number] are more likely to indicate illness). There was also support for the Duration rule, Pattern rule, Chronology rule, Severity (of interference) rule, Age-illness rule, Novelty rule, Similarity rule, Location rule, and Optimistic bias rule. There was a lack of evidence for the Prevalence and Stress-illness rules. CONCLUSIONS: People do appear to use heuristics to guide their appraisal of symptoms and their perceived need for healthcare. Heuristics may be an important aspect underlying symptom misinterpretation, thus making them key targets for interventions. For instance, campaigns could tackle cognitive biases rather than focusing on specific symptom awareness. Myth-busting messages could highlight that intermittent, mild symptoms, and symptoms that are not worsening can be signs of a serious health problem.
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ItemEvaluation of the benefits, harms and cost-effectiveness of potential alternatives to iFOBT testing for colorectal cancer screening in Australia(WILEY, 2018-07-15)The Australian National Bowel Cancer Screening Program (NBCSP) will fully roll-out 2-yearly screening using the immunochemical Faecal Occult Blood Testing (iFOBT) in people aged 50 to 74 years by 2020. In this study, we aimed to estimate the comparative health benefits, harms, and cost-effectiveness of screening with iFOBT, versus other potential alternative or adjunctive technologies. A comprehensive validated microsimulation model, Policy1-Bowel, was used to simulate a total of 13 screening approaches involving use of iFOBT, colonoscopy, sigmoidoscopy, computed tomographic colonography (CTC), faecal DNA (fDNA) and plasma DNA (pDNA), in people aged 50 to 74 years. All strategies were evaluated in three scenarios: (i) perfect adherence, (ii) high (but imperfect) adherence, and (iii) low adherence. When assuming perfect adherence, the most effective strategies involved using iFOBT (annually, or biennially with/without adjunct sigmoidoscopy either at 50, or at 54, 64 and 74 years for individuals with negative iFOBT), or colonoscopy (10-yearly, or once-off at 50 years combined with biennial iFOBT). Colorectal cancer incidence (mortality) reductions for these strategies were 51-67(74-80)% in comparison with no screening; 2-yearly iFOBT screening (i.e. the NBCSP) would be associated with reductions of 51(74)%. Only 2-yearly iFOBT screening was found to be cost-effective in all scenarios in context of an indicative willingness-to-pay threshold of A$50,000/life-year saved (LYS); this strategy was associated with an incremental cost-effectiveness ratio of A$2,984/LYS-A$5,981/LYS (depending on adherence). The fully rolled-out NBCSP is highly cost-effective, and is also one of the most effective approaches for bowel cancer screening in Australia.
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ItemThe Improving Rural Cancer Outcomes Trial: a cluster-randomised controlled trial of a complex intervention to reduce time to diagnosis in rural cancer patients in Western Australia (vol 117, pg 1459, 2017)(NATURE PUBLISHING GROUP, 2018-03-20)This corrects the article DOI: 10.1038/bjc.2017.310.
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ItemThe influence of health literacy on the timely diagnosis of symptomatic cancer: A systematic review(WILEY, 2019-01)Low health literacy has been associated with poor cancer screening uptake, difficulty in making treatment choices and reduced quality of life following a cancer diagnosis, yet it is unclear whether and how health literacy influences the pathway to diagnosis for patients with cancer symptoms. This systematic review aimed to evaluate the influence of health literacy on the timely diagnosis of symptomatic cancer. Literature was searched between January 1990 and May 2017 using MEDLINE, Embase, Scopus, ASSIA, CINAHL and PsycINFO. Only three papers met the inclusion criteria. These reported two qualitative studies and one quantitative, with adult patients diagnosed with gastrointestinal (colon, rectum and pancreas), cervical and breast cancer. The definition and assessment of health literacy varied between the studies, as did the descriptions of the pathway to diagnosis. Due to the methodological weaknesses identified, the conclusions are limited; however, the studies did highlight important considerations in the definition and measurement of health literacy. Further research is required that clearly defines health literacy and follows the principles of the Aarhus Statement to assess the influence of health literacy on the pathway to cancer diagnosis. The protocol for this review was registered with PROSPERO (CRD42016048917).
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ItemThe Aarhus statement on cancer diagnostic research: turning recommendations into new survey instruments(BMC, 2018-09-03)BACKGROUND: Over recent years there has been a growth in cancer early diagnosis (ED) research, which requires valid measurement of routes to diagnosis and diagnostic intervals. The Aarhus Statement, published in 2012, provided methodological guidance to generate valid data on these key pre-diagnostic measures. However, there is still a wide variety of measuring instruments of varying quality in published research. In this paper we test comprehension of self-completion ED questionnaire items, based on Aarhus Statement guidance, and seek input from patients, GPs and ED researchers to refine these questions. METHODS: We used personal interviews and consensus approaches to generate draft ED questionnaire items, then a combination of focus groups and telephone interviews to test comprehension and obtain feedback. A framework analysis approach was used, to identify themes and potential refinements to the items. RESULTS: We found that many of the questionnaire items still prompted uncertainty in respondents, in both routes to diagnosis and diagnostic interval measurement. Uncertainty was greatest in the context of multiple or vague symptoms, and potentially ambiguous time-points (such as 'date of referral'). CONCLUSIONS: There are limits on the validity of self-completion questionnaire responses, and refinements to the wording of questions may not be able to completely overcome these limitations. It's important that ED researchers use the best identifiable measuring instruments, but accommodate inevitable uncertainty in the interpretation of their results. Every effort should be made to increase clarity of questions and responses, and use of two or more data sources should be considered.
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ItemThe LEAD study protocol: a mixed-method cohort study evaluating the lung cancer diagnostic and pre-treatment pathways of patients from Culturally and Linguistically Diverse (CALD) backgrounds compared to patients from Anglo-Australian backgrounds(BMC, 2018-07-21)BACKGROUND: Lung cancer is the leading cause of cancer mortality worldwide. Early diagnosis and treatment is a key factor in reducing mortality and improving patient outcomes. To achieve this, it is important to understand the diagnostic pathways of cancer patients. Patients from Culturally and Linguistically Diverse (CALD) are a vulnerable group for lung cancer with higher mortality rates than Caucasian patients. The aim of this study is to explore differences in the lung cancer diagnostic pathways between CALD and Anglo-Australian patients and factors underlying these differences. METHODS: This is a prospective, observational cohort study using a mixed-method approach. Quantitative data regarding time intervals in the lung cancer diagnostic pathways will be gathered via patient surveys, General practitioner (GP) review of general practice records, and case-note analysis of hospital records. Qualitative data will be gathered via structured interviews with lung cancer patients, GPs, and hospital specialists. The study will be conducted in five study sites across three states in Australia. Anglo-Australian patients and patients from five CALD groups (i.e., Arabic, Chinese, Greek, Italian and Vietnamese communities) will mainly be identified through the list of new cases presented at lung multidisciplinary team meetings. For the quantitative component, it is anticipated that 724 patients (362 Anglo-Australian and 362 CALD patients) will be recruited to obtain a final sample of 290 (145 per group) assuming a 50% patient survey completion rate and a 80% GP record review completion rate. For the qualitative component, 60 interviews with lung cancer patients (10 Anglo-Australian and 10 patients per CALD group), 20 interviews with GPs, and 20 interviews with specialists will be conducted. DISCUSSION: This is the first Australian study to compare the time intervals along the lung cancer diagnostic pathway between CALD and Anglo-Australian patients. The study will also explore the underlying patient, healthcare provider, and health system factors that influence the time intervals in the two groups. This information will improve our understanding of the effect of ethnicity on health outcomes among lung cancer patients and will inform future interventions aimed at early diagnosis and treatment for lung cancer, particularly patients from CALD backgrounds. TRIAL REGISTRATION: The project was retrospectively registered with Australian New Zealand Clinical Trials Registry (registration number: ACTRN12617000957392 , date registered: 4th July 2017).
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ItemFactors associated with prostate specific antigen testing in Australians: Analysis of the New South Wales 45 and Up Study(NATURE PORTFOLIO, 2018-03-09)Australia has one of the highest incidence rates of prostate cancer (PC) worldwide, due in part to widespread prostate specific antigen (PSA) testing. We aimed to identify factors associated with PSA testing in Australian men without a diagnosis of prostate cancer or prior prostate disease. Participants were men joining the 45 and Up Study in 2006-2009, aged ≥45 years at recruitment. Self-completed questionnaires were linked to cancer registrations, hospitalisations, health services data and deaths. Men with a history of PC, radical prostatectomy or a "monitoring" PSA test for prostate disease were excluded. We identified Medicare reimbursed PSA tests during 2012-2014. Multivariable logistic regression was used to estimate adjusted odds ratios (OR) for the association between having PSA tests and factors of interest. Of the 62,765 eligible men, 51.8% had at least one screening PSA test during 2012-2014. Factors strongly associated with having a PSA test included having 27+ general practitioner consultations (versus 3-9 consultations; OR = 2.00; 95%CI = 1.90-2.11), benign prostatic hyperplasia treatment (versus none; OR = 1.59(95%CI = 1.49-1.70), aged 60-69 years (versus 50-59 years; OR = 1.54; 95%CI = 1.48-1.60). These results emphasise the important role of primary care in decision making about PSA testing.