Discovery publications - 2014
Responding to symptoms suggestive of lung cancer: a qualitative interview study.
Birt L, Hall N, Emery J, Banks J, Mills K, Johnson M, Hamilton W, Walter FM.
BMJ Open Respir Res. 2014 Dec 11;1(1):e000067. doi: 10.1136/bmjresp-2014-000067. eCollection 2014.
Late diagnosis of lung cancer can impact on survival rates. Patients delay seeking help for a number of reasons. This study explored symptom appraisal and help-seeking decisions among patients referred to specialist respiratory services with symptoms suggestive of lung cancer.
In-depth qualitative interviews with patients as soon as possible after referral, ideally before diagnosis and mainly within 10 weeks, explored factors impacting on their pathways prior to referral. Framework analysis, underpinned by the Model of Pathways to Treatment, was used to explore the data with particular focus on patients' beliefs and experiences, disease factors and healthcare professional influences.
35 patients were interviewed (aged 41-88 years, 15 women, 17 with lung cancer). All described similar presenting symptoms and triggers to seek help. Appraisal of symptoms was influenced by whether they had a lung comorbidity; seriousness of symptoms was interpreted within the context of previous illness experiences. Help-seeking was triggered when: symptoms failed to respond as expected; there was an increased awareness of symptoms of lung cancer; the public nature of a cough meant others were able to endorse help-seeking. Almost half visited the general practitioner (GP) two or more times before referral; during this period they reinterpreted initial symptoms and appraised new symptoms. The meaning given to symptoms changed over time and many became increasingly concerned they may have lung cancer. The GP played a role in ensuring timely further help-seeking but often there was little guidance on how to monitor symptoms or when to reconsult.
Patients diagnosed with and without lung cancer had similar symptom pathways. Findings provide guidance for lung cancer awareness campaigns on the importance of social networks in endorsing patient help-seeking. The importance of appropriate advice, monitoring and safety-netting procedures by GPs for people presenting with symptoms suggestive of lung cancer is also highlighted.
Symptom lead times in lung and colorectal cancers: what are the benefits of symptom-based approaches to early diagnosis?
Biswas M, Ades AE, Hamilton W.
Br J Cancer. 2015 Jan 20;112(2):271-7. doi: 10.1038/bjc.2014.597. Epub 2014 Dec 2.
Individuals with undiagnosed lung and colorectal cancers present with non-specific symptoms in primary care more often than matched controls. Increased access to diagnostic services for patients with symptoms generates more early-stage diagnoses, but the mechanisms for this are only partially understood.
We re-analysed a UK-based case-control study to estimate the Symptom Lead Time (SLT) distribution for a range of potential symptom criteria for investigation. Symptom Lead Time is the time between symptoms caused by cancer and eventual diagnosis, and is analogous to Lead Time in a screening programme. We also estimated the proportion of symptoms in lung and colorectal cancer cases that are actually caused by the cancer.
Mean Symptom Lead Times were between 4.1 and 6.0 months, with medians between 2.0 and 3.2 months. Symptom Lead Time did not depend on stage at diagnosis, nor which criteria for investigation are adopted. Depending on the criteria, an estimated 27-48% of symptoms in individuals with as yet undiagnosed lung cancer, and 12-32% with undiagnosed colorectal cancer are not caused by the cancer.
In most cancer cases detected by a symptom-based programme, the symptoms are caused by cancer. These cases have a short lead time and benefit relatively little. However, in a significant minority of cases cancer detection is serendipitous. This group experiences the benefits of a standard screening programme, a substantial mean lead time and a higher probability of early-stage diagnosis.
Decision making and referral from primary care for possible lung and colorectal cancer: a qualitative study of patients' experiences. Banks J, Walter FM, Hall N, Mills K, Hamilton W, Turner KM. British Journal of General Practice 2014 Dec;64(629):e775-82. doi: 10.3399/bjgp14X682849.
The challenge for GPs when assessing whether to refer a patient for cancer investigation is that many cancer symptoms are also caused by benign self-limiting illness. UK National Institute for Health and Care Excellence (NICE) referral guidelines emphasise that the patient should be involved in the decision-making process and be informed of the reasons for referral. Research to date, however, has not examined the extent to which these guidelines are borne out in practice.
To assess the degree to which patients are involved in the decision to be referred for investigation for symptoms associated with cancer and their understanding of the referral.
Design and setting:
Qualitative interview study of patients referred to secondary care for symptoms suspicious of lung and colorectal cancer. Patients were recruited from two regions of England using maximum variation sampling.
Transcribed interviews were analysed thematically.
The analysis was based on 34 patient interviews. Patients in both symptom pathways reported little involvement in the decision to be referred for investigation. This tended to be accompanied by a patient expectation for referral, however, to explain ongoing and un-resolving symptoms. It was also found that reasons for referral tended to be couched in non-specific terms rather than cancer investigation, even when the patient was on a cancer-specific pathway.
GPs should consider a more overt discussion with patients when referring them for further investigation of symptoms suspicious of cancer. This would align clinical practice with NICE guidelines and encourage more open discussion between GPs and primary care patients around cancer.
A qualitative exploration of the use of calendar landmarking instruments in cancer symptom research. Mills K, Emery J, Cheung C, Hall N, Birt L, Walter FM. BMC Family Practice 2014; 15(1): 167.
Late diagnosis is considered to be a major factor contributing to poorer cancer survival rates in the UK. Interventions have focussed on the promotion of earlier diagnosis in patients with potential cancer symptoms. However, to assess the effectiveness of these interventions, the time from symptom onset to presentation needs to be reliably and accurately measured. This qualitative study explored the use of calendar landmarking instruments in cancer symptom research.
We performed a secondary analysis of transcripts of interviews using the calendar landmarking instrument, undertaken with patients who had either been diagnosed with cancer (n=40, IRCO study, Western Australia), or who had symptoms suggestive of cancer (n= 38, SYMPTOM study, North East and Eastern England). We used constant comparison methods to identify use of the calendar landmarking instruments and the impact of their application.
The calendar landmarking instrument appeared to help many patients, either by acting as a prompt or helping to refine recall of events. A combination of personal (e.g. birthday) and national (e.g. Christmas) landmarks seemed to be the most effective. Calendar landmarking instruments appeared more useful where the time period between onset of symptoms and date of first consultation was less than three months. The interviewee's age, gender and cancer type did not appear to influence whether or not the instrument facilitated recall, and there were no instances where the use of the instrument resulted in the disclosure of a new first symptom. Symptoms of similar chronic conditions could create difficulties when applying the instrument; it was difficult for these participants to characterise and disentangle their symptoms which prompted their decisions to seek help. Some participants tended to prefer to use their own, already personalised, diaries to assist in their recall of events.
This study is the first to describe the potential role of calendar landmarking instruments to support research interviews which explore symptoms and events along the cancer diagnostic pathway. The major challenge remains as to whether they actually improve accuracy of recall.
Price SJ, Shephard EA, Stapley SA, Barraclough K, Hamilton WT. Non-visible versus visible haematuria and bladder cancer risk: a study of electronic records in primary care. Br J Gen Pract. 2014 Sep;64(626):e584-9. doi: 10.3399/bjgp14X681409.
Diagnosis of bladder cancer relies on investigation of symptoms presented to primary care, notably visible haematuria. The importance of non-visible haematuria has never been estimated.
To estimate the risk of bladder cancer with non-visible haematuria.
DESIGN AND SETTING:
A case-control study using UK electronic primary care medical records, including uncoded data to supplement coded records.
A total of 4915 patients (aged ≥40 years) diagnosed with bladder cancer between January 2000 and December 2009 were selected from the Clinical Practice Research Datalink and matched to 21 718 controls for age, sex, and practice. Variables for visible and non-visible haematuria were derived from coded and uncoded data. Analyses used multivariable conditional logistic regression, followed by estimation of positive predictive values (PPVs) for bladder cancer using Bayes' theorem.
Non-visible haematuria (coded/uncoded data) was independently associated with bladder cancer: odds ratio (OR) 20 (95% confidence interval [CI] =12 to 33). The PPV of non-visible haematuria was 1.6% (95% CI = 1.2 to 2.1) in those aged ≥60 years and 0.8% (95% CI = 0.1 to 5.6) in 40-59-year-olds. The PPV of visible haematuria was 2.8% (95% CI = 2.5 to 3.1) and 1.2% (95% CI = 0.6 to 2.3) for the same age groups respectively, lower than those calculated using coded data alone. The proportion of records of visible haematuria in coded, rather than uncoded, format was higher in cases than in controls (P<0.002, Χ2 test). There was no evidence for such differential recording of non-visible haematuria by case/control status (P = 0.78), although, overall, the uncoded format was preferred (P<0.001).
Both non-visible and visible haematuria are associated with bladder cancer, although the visible form confers nearly twice the risk of cancer compared with the non-visible form. GPs' style of record keeping varies by symptom and possible diagnosis.
Symptom lead time distribution in lung cancer: natural history and prospects for early diagnosis. Ades AE, Biswas M, Welton NJ, Hamilton W. Int J Epidemiol. 2014 Aug 29. pii: dyu174.
Before their diagnosis, patients with cancer present in primary care more frequently than do matched controls. This has raised hopes that earlier investigation in primary care could lead to earlier stage at diagnosis.
We re-analysed primary care symptom data collected from 247 lung cancer cases and 1235 matched controls in Devon, UK. We identified the most sensitive and specific definition of symptoms, and estimated its incidence in cases and controls prior to diagnosis. We estimated the symptom lead time (SLT) distribution (the time between symptoms attributable to cancer and diagnosis), taking account of the investigations already carried out in primary care. The impact of route of diagnosis on stage at diagnosis was also examined.
Symptom incidence in cases was higher than in controls 2 years before diagnosis, accelerating markedly in the last 6 months. The median SLT was under 3 months, with mean 5.3 months [95% credible interval (CrI) 4.5-6.1] and did not differ by stage at diagnosis. An earlier stage at diagnosis was observed in patients identified through chest X-ray originated in primary care.
Most symptoms preceded clinical diagnosis by only a few months. Symptom-based investigation would lengthen lead times and result in earlier stage at diagnosis in a small proportion of cases, but would be far less effective than standard screening targeted at smokers.
Preferences for cancer investigation: a vignette-based study of primary-care attendees
Jonathan Banks, Sandra Hollinghurst, Lin Bigwood, Tim J Peters, Fiona M Walter, Willie Hamilton The Lancet Oncology, Early Online Publication, 14 January 2014 doi:10.1016/S1470-2045(13)70588-6
The UK lags behind many European countries in terms of cancer survival. Initiatives to address this disparity have focused on barriers to presentation, symptom recognition, and referral for specialist investigation. Selection of patients for further investigation has come under particular scrutiny, although preferences for referral thresholds in the UK population have not been studied. We investigated preferences for diagnostic testing for colorectal, lung, and pancreatic cancers in primary-care attendees.
In a vignette-based study, researchers recruited individuals aged at least 40 years attending 26 general practices in three areas of England between Dec 6, 2011, and Aug 1, 2012. Participants completed up to three of 12 vignettes (four for each of lung, pancreatic, and colorectal cancers), which were randomly assigned. The vignettes outlined a set of symptoms, the risk that these symptoms might indicate cancer (1%, 2%, 5%, or 10%), the relevant testing process, probable treatment, possible alternative diagnoses, and prognosis if cancer were identified. Participants were asked whether they would opt for diagnostic testing on the basis of the information in the vignette.
3469 participants completed 6930 vignettes. 3052 individuals (88%) opted for investigation in their first vignette. We recorded no strong evidence that participants were more likely to opt for investigation with a 1% increase in risk of cancer (odds ratio [OR] 1·02, 95% CI 0·99-1·06; p=0·189), although the association between risk and opting for investigation was strong when colorectal cancer was analysed alone (1·08, 1·03-1·13; p=0·0001). In multivariable analysis, age had an effect in all three cancer models: participants aged 60-69 years were significantly more likely to opt for investigation than were those aged 40-59 years, and those aged 70 years or older were less likely. Other variables associated with increased likelihood of opting for investigation were shorter travel times to testing centre (colorectal and lung cancers), a family history of cancer (colorectal and lung cancers), and higher household income (colorectal and pancreatic cancers).
Participants in our sample expressed a clear preference for diagnostic testing at all risk levels, and individuals want to be tested at risk levels well below those stipulated by UK guidelines. This willingness should be considered during design of cancer pathways, particularly in primary care. The public engagement with our study should encourage general practitioners to involve patients in referral decision making.
New Discovery Research publication
The SYMPTOM Study team's research into symptom appraisal for colorectal cancer has been published in BMJ Open. This is a unique piece of research which compares the appraisal and help seeking experiences of patients with colorectal cancer symptoms who go on to have cancer and those who turn out to have non-cancer conditions. The research did not identify any clear differences between the two groups but did identify important barriers to presentation around the ‘private nature’ of colorectal symptoms which will prove useful to policy makers and the design of awareness campaigns. To read more about the research paper see the results section here.
Discovery conference slides available & new research publications
The Discovery Programme held its research conference at the Royal College of General Practitioners on June 2nd 2015. The team presented their research findings and outlined the impact of the programme to a wide range of patient groups, clinicians, policy makers, researchers and journalists. The PowerPoint slides used during the presentation have been uploaded to this website and can be viewed here.
There are also 2 new research papers to report. Chantal Balasooriya-Smeekens has published the literature review of her PhD in Psycho-Oncology, "The role of emotions in time to presentation for symptoms suggestive of cancer: a systematic review of quantitative studies". Abstract and publication details are here and further papers from Chantal's PhD will be published soon.
Nafees Din has published a new paper under the Discovery related research umbrella. The paper uses Discovery data drawn from the CAPER (theme 2) studies and considers "Age and Gender Variations in Cancer Diagnostic Intervals in 15 Cancers". Full publication details and abstract can be found here.