Cancer Benchmarking Research Articles

Responsibility for follow-up during the diagnostic process in primary care: a secondary analysis of International Cancer Benchmarking Partnership data.

It is unclear to what extent primary care practitioners (PCPs) should retain responsibility for follow-up to ensure that patients are monitored until their symptoms or signs are explained. To explore the extent to which PCPs retain responsibility for diagnostic follow-up actions across 11 international jurisdictions. A secondary analysis of survey data from the International Cancer Benchmarking Partnership. The authors counted the proportion of 2879 PCPs who retained responsibility for each area of follow-up (appointments, test results, and non-attenders). Proportions were weighted by the sample size of each jurisdiction. Pooled estimates were obtained using a random-effects model, and UK estimates were compared with non-UK ones. Free-text responses were analysed to contextualise quantitative findings using a modified grounded theory approach. PCPs varied in their retention of responsibility for follow-up from 19% to 97% across jurisdictions and area of follow-up. Test reconciliation was inadequate in most jurisdictions. Significantly fewer UK PCPs retained responsibility for test result communication (73% versus 85%, P = 0.04) and non-attender follow-up (78% versus 93%, P<0.01) compared with non-UK PCPs. PCPs have developed bespoke, inconsistent solutions to follow-up. In cases of greatest concern, 'double safety netting' is described, where both patient and PCP retain responsibility. The degree to which PCPs retain responsibility for follow-up is dependent on their level of concern about the patient and their primary care system's properties. Integrated systems to support follow-up are at present underutilised, and research into their development, uptake, and effectiveness seems warranted.

Negative cancer beliefs, recognition of cancer symptoms and anticipated time to help-seeking: an international cancer benchmarking partnership (ICBP) study

BackgroundUnderstanding what influences people to seek help can inform interventions to promote earlier diagnosis of cancer, and ultimately better cancer survival. We aimed to examine relationships between negative cancer beliefs, recognition of cancer symptoms and how long people think they would take to go to the doctor with possible cancer symptoms (anticipated patient intervals).MethodsTelephone interviews of 20,814 individuals (50+) in the United Kingdom, Australia, Canada, Denmark, Norway and Sweden were carried out using the Awareness and Beliefs about Cancer Measure (ABC). ABC included items on cancer beliefs, recognition of cancer symptoms and anticipated time to help-seeking for cough and rectal bleeding. The anticipated time to help-seeking was dichotomised as over one month for persistent cough and over one week for rectal bleeding.ResultsNot recognising persistent cough/hoarseness and unexplained bleeding as cancer symptoms increased the likelihood of a longer anticipated patient interval for persistent cough (OR = 1.66; 95%CI = 1.47–1.87) and rectal bleeding (OR = 1.90; 95%CI = 1.58–2.30), respectively. Endorsing four or more out of six negative beliefs about cancer increased the likelihood of longer anticipated patient intervals for persistent cough and rectal bleeding (OR = 2.18; 95%CI = 1.71–2.78 and OR = 1.97; 95%CI = 1.51–2.57). Many negative beliefs about cancer moderated the relationship between not recognising unexplained bleeding as a cancer symptom and longer anticipated patient interval for rectal bleeding (p = 0.005).ConclusionsIntervention studies should address both negative beliefs about cancer and knowledge of symptoms to optimise the effect.

Patients’ initial steps to cancer diagnosis in Denmark, England and Sweden: what can a qualitative, cross-country comparison of narrative interviews tell us about potentially modifiable factors?

ObjectivesTo illuminate patterns observed in International Cancer Benchmarking Programme studies by extending understanding of the various influences on presentation and referral with cancer symptoms.DesignCross-country comparison of Denmark, England and Sweden...

Investigation of the international comparability of population-based routine hospital data set derived comorbidity scores for patients with lung cancer

IntroductionThe International Cancer Benchmarking Partnership (ICBP) identified significant international differences in lung cancer survival. Differing levels of comorbid disease across ICBP countries has been suggested as a potential explanation of...

Not visiting the GP and the risk of cancer: what are the possible implications for research, policy and practice?

Not visiting the GP and the risk of cancer: what are the possible implications for research, policy and practice?

Improving early diagnosis of cancer in UK general practice.

The UK has a poor record on cancer survival: international studies such as Eurocare and the International Cancer Benchmarking Partnership (ICBP) have consistently demonstrated that cancer survival rates in the UK are significantly worse than in other developed countries. For example, in data from 2005–2007, only 8.8% of patients diagnosed with lung cancer in the UK survived for 5 years, compared with 18.4% in Canada.1 These differences are thought to reflect an increased incidence of cancer diagnosed in the UK at a late clinical stage, so-called ‘delayed diagnosis’. The causes of delayed diagnosis of cancer in general practice (primary care delay) in the UK remain uncertain. It has been consistently suggested that the ‘gatekeeping’ role of GPs in the UK contributes to the problem. When asked to consider (fictitious) cases of possible cancer, UK GPs were less likely to consider immediate investigation or referral than doctors from countries with higher survival rates.2 However, no good correlation was found between gatekeeping and cancer survival in an international comparison of healthcare systems.3 Relatively poor access to CT/MRI and to specialist advice may also contribute to the problem in the UK. Recent data show that cancer survival rates in the UK are improving. However, this is also true in other countries, such that the gap between the UK and best-performing countries remains, with one or two notable exceptions, such as with breast …

Measurement properties of the Danish version of the Awareness and Beliefs about Cancer (ABC) measure

BackgroundThe International Cancer Benchmarking Partnership aims to study international differences in cancer survival and the possible causes. Participating countries are Australia, Canada, Norway, Sweden, Denmark and the UK and a particular focus area is differences in awareness and beliefs about cancer. In this connection, the Awareness and Beliefs about Cancer (ABC) measure has been translated into multiple languages. The aim of this study is to appraise the translation process and measurement properties of the Danish version of the ABC measure.MethodsThe translation process included forward and backward translations and a pilot-test. Data quality was assessed using survey data from 3000 Danish respondents and content validity indexes were calculated based on judgments from ten academic researchers. Construct validity was determined by a confirmative factor analysis (CFA) and exploratory factor analyses (EFA) using survey data and a known group comparison analysis including 56 persons. Test-retest reliability was assessed based on responses from 123 person whom completed the interview twice with an interval of 2–3 weeks.ResultsThe translation process resulted in a Danish ABC measure conceptually equivalent to the English ABC measure. Data quality was acceptable in relation to non-response to individual items which was maximum 0.3%, but the percentage of respondents answering ‘don’t know’ was above 3% for 16 out of 48 items. Content validity indexes showed that items adequately reflected and represented the constructs to be measured (item content validity indexes: 0.9–1.0; construct content validity indexes: 0.8–1.0). The hypothesised factor structure could not be replicated by a CFA, but EFA on each individual subscale showed that six out of seven subscales were unidimensional. The ABC measure discriminated well between non-medical academics and medical academics, but had some difficulties in discriminating between educational groups. Test–retest reliability was moderate to substantial for most items.ConclusionsThe Danish ABC measure is a useful measurement that is accepted and understood by the target group and with accepted measurement criteria for content validity and test-retest reliability. Future studies may further explore the factorial structure of the ABC measure and should focus on improving the response categories.

Ovarian Cancer in ManitobA: Trends in Incidence and Survival, 1992–2011

Because the International Cancer Benchmarking Partnership, in a study of diagnosis years between 1995 and 2007, showed lower-than-expected survival for Manitoba's ovarian cancer patients, we undertook an analysis to describe the features of ovarian cancer diagnosed in Manitoba during a 20-year period. We also determined the most recent trends in survival to see if the previous results were sustained. In this retrospective cohort study, ovarian cancer cases diagnosed during 1992-2011 were extracted from the Manitoba Cancer Registry. The incidence of ovarian cancer was calculated for the overall group and for age, morphology, residence, treatment, and stage. Trends over time, with a particular focus on changes that might correlate with poor survival, were analyzed. The 1- and 3-year relative survival rates were also calculated. The incidence of ovarian cancer did not vary over time (p = 0.640), even when stratified by age or morphology groups. Use of adjuvant chemotherapy decreased (p = 0.005) and use of neoadjuvant chemotherapy increased over time (p = 0.002). Diagnoses of stage iv cancers declined over time (p < 0.020). Trends in incidence did not coincide with previously observed decreases in relative survival. A decline in diagnoses of stage iv ovarian cancer could be responsible for a recent increase in relative survival. However, sample size might have limited power in some analyses, and the previously reported decrease in relative survival might have been due to a random fluctuation in the data. Future efforts will focus on continued monitoring of the patterns of ovarian cancer presentation and outcomes in Manitoba.

Investigations and referral for suspected cancer in primary care in New Zealand-A survey linked to the International Cancer Benchmarking Partnership.

A national internet-based survey of New Zealand (NZ) primary care physicians (n=192) used the survey instrument developed by the International Cancer Benchmarking Partnership (ICBP). Practitioners were recruited by a range of methods assisted by NZ general practice networks and contacts. Compared to 11 other ICBP jurisdictions, direct access to diagnostic tests was more limited and took more time than in most other areas; the average wait for a test to be done and reported was 3.0weeks for X-rays and 8.0 for ultrasound, compared to ICBP averages of 1.6 and 4.7weeks respectively. Forty-five per cent of respondents could get specialist advice within 48hr. Sixty-six per cent were aware of NZ guidelines for cancer in primary care, and of those 44% consulted them sometimes or often. Access to tests was greater, and time required much less, in the private than the public care system. NZ respondents each answered two of five clinical vignettes, with results similar to other ICBP areas. The survey also included general practice trainees (N=42); their results were similar to the main group. The results suggest that improvements in prompt access to diagnostic tests and referrals for suspected cancer need to be given priority in NZ.

Patient perspectives on delays in diagnosis and treatment of cancer: a qualitative analysis of free-text data.

Earlier cancer diagnosis is crucial in improving cancer survival. The International Cancer Benchmarking Partnership Module 4 (ICBP4) is a quantitative survey study that explores the reasons for delays in diagnosis and treatment of breast, colorectal, lung, and ovarian cancer. To further understand the associated diagnostic processes, it is also important to explore the patient perspectives expressed in the free-text comments. To use the free-text data provided by patients completing the ICBP4 survey to augment the understanding of patients' perspectives of their diagnostic journey. Qualitative analysis of the free-text data collected in Wales between October 2013 and December 2014 as part of the ICBP4 survey. Newly-diagnosed patients with either breast, ovarian, colorectal, or lung cancer were identified from registry data and then invited by their GPs to participate in the survey. A thematic framework was used to analyse the free-text comments provided at the end of the ICBP4 survey. Of the 905 patients who returned a questionnaire, 530 included comments. The free-text data provided information about patients' perspectives of the diagnostic journey. Analysis identified factors that acted as either barriers or facilitators at different stages of the diagnostic process. Some factors, such as screening, doctor-patient familiarity, and private treatment, acted as both barriers and facilitators depending on the context. Factors identified in this study help to explain how existing models of cancer diagnosis (for example, the Pathways to Treatment Model) work in practice. It is important that clinicians are aware of how these factors may interact with individual clinical cases and either facilitate, or act as a barrier to, subsequent cancer diagnosis. Understanding and implementing this knowledge into clinical practice may result in quicker cancer diagnoses.

Barriers to cancer symptom presentation among people from low socioeconomic groups: a qualitative study.

BackgroundSocioeconomic inequalities in cancer survival can in part be explained by long patient intervals among people from deprived groups; however, the reasons for this are unclear. This qualitative study explores the actual and anticipated barriers to cancer symptom presentation in the context of socioeconomic deprivation.MethodsThirty participants were recruited through the International Cancer Benchmarking Partnership Welsh database (n = 20), snowball sampling (n = 8) and community partners (n = 2). Semi-structured qualitative interviews were conducted with symptomatic and asymptomatic adults over the age of 50 years, who were identified as being from a low socioeconomic group based on multiple individual and group level indicators. Transcripts were analysed using a Framework approach based on the COM-B model (Capability, Opportunity, Motivation-Behaviour).ResultsThere was evidence of poor awareness of non-specific cancer symptoms (Capability), fearful and fatalistic beliefs about cancer (Motivation), and various barriers to accessing an appointment with the family physician (Opportunity) and full disclosure of symptoms (Capability). These in combination were associated with a lengthened patient interval among participants. Social networks (Opportunity) were influential on the formation of knowledge and beliefs about cancer. Participants’ behavioural and normative beliefs were usually formed and reinforced by people they knew with cancer, and such beliefs were considered to lengthen the patient interval. Discussing symptoms with a family member or friend before a visit to the family physician was the norm, and could act as a barrier or facilitator depending on the quality of advice given (Opportunity). Economic hardship meant fulfilling basic day-to-day needs such as finding money for food were prioritised over medical help seeking (Opportunity).ConclusionsThe complex interaction between individual characteristics and socio-environmental factors is important for understanding cancer symptom presentation behaviour, especially in the context of socioeconomic deprivation. Interventions targeted at deprived communities should take into account the wider social influences on symptom presentation behaviour.

Evaluation of Pancreatic Cancer Clinical Trials and Benchmarks for Clinically Meaningful Future Trials: A Systematic Review.

Progress in the treatment of pancreatic adenocarcinoma has been minimal; it remains the only major cancer type with a 5-year survival rate of less than 10%. To explore why a large proportion of advanced pancreatic cancer clinical trials executed over the past 25 years have had negative results and to identify benchmarks that could have predicted success. Phase 3 studies of patients with advanced pancreatic cancer were identified by searching clinicaltrials.gov and the scientific literature. Thirty-two phase 3 studies in 13 675 chemotherapy-naive patients resulted in 3 agents or combinations being considered clinically meaningful. Nineteen agents or combinations (70%) were tested in phase 2 trials preceding the phase 3 trial. In cases with paired phase 2 and 3 results, meeting the primary end point of the phase 2 trial predicted the outcome of the phase 3 trial 76% of the time but proceeded despite phase 2 negative results in 10 cases. We applied criteria for a clinically meaningful result identified by the American Society of Clinical Oncology (ASCO) Cancer Research Committee to these historical cases. Overall, progression-free and 1-year survival of experimental arms was compared with time period-controlled median values of control arms to normalize for the observed increase in response to gemcitabine over time. Applying the benchmark of a 50% improvement in overall survival as the primary end point to phase 2 data, or secondary end points of a 90% increase in 1-year survival or an 80% to 100% increase in progression-free survival, showed the greatest ability to predict a clinically meaningful phase 3 trial. Had these criteria been applied to these trials over the past 25 years, more than 11 571 patients enrolled in phase 3 trials that did not meet the primary end point could theoretically have been diverted to earlier-stage trials in an attempt to more rapidly advance the field.

Gene-set activity toolbox (GAT): A platform for microarray-based cancer diagnosis using an integrative gene-set analysis approach.

Cancer is a complex disease that cannot be diagnosed reliably using only single gene expression analysis. Using gene-set analysis on high throughput gene expression profiling controlled by various environmental factors is a commonly adopted technique used by the cancer research community. This work develops a comprehensive gene expression analysis tool (gene-set activity toolbox: (GAT)) that is implemented with data retriever, traditional data pre-processing, several gene-set analysis methods, network visualization and data mining tools. The gene-set analysis methods are used to identify subsets of phenotype-relevant genes that will be used to build a classification model. To evaluate GAT performance, we performed a cross-dataset validation study on three common cancers namely colorectal, breast and lung cancers. The results show that GAT can be used to build a reasonable disease diagnostic model and the predicted markers have biological relevance. GAT can be accessed from http://gat.sit.kmutt.ac.th where GAT's java library for gene-set analysis, simple classification and a database with three cancer benchmark datasets can be downloaded.

An investigation of routes to cancer diagnosis in 10 international jurisdictions, as part of the International Cancer Benchmarking Partnership: survey development and implementation

ObjectivesThis paper describes the methods used in the International Cancer Benchmarking Partnership Module 4 Survey (ICBPM4) which examines time intervals and routes to cancer diagnosis in 10 jurisdictions. We present...

Awareness of cancer symptoms and anticipated patient interval for healthcare seeking. A comparative study of Denmark and Sweden

Background Recent epidemiologic data show that Denmark has considerably poorer survival from common cancers than Sweden. This may be related to a lower awareness of cancer symptoms and longer patient intervals in Denmark than in Sweden. The aims of this study were to: 1) compare population awareness of three possible symptoms of cancer (unexplained lump or swelling, unexplained bleeding and persistent cough or hoarseness); 2) compare anticipated patient interval when noticing any breast changes, rectal bleeding and persistent cough; and 3) examine whether potential differences were noticeable in particular age groups or at particular levels of education in a Danish and Swedish population sample.Method Data were derived from Module 2 of the International Cancer Benchmarking Partnership. Telephone interviews using the Awareness and Beliefs about Cancer measure were conducted in 2011 among 3000 adults in Denmark and 3070 adults in Sweden.Results Danish respondents reported a higher awareness of two of three symptoms (i.e. unexplained lump or swelling and persistent cough or hoarseness) and a shorter anticipated patient interval for two of three symptoms studied (i.e. any breast changes and rectal bleeding) than Swedish respondents. Differences in symptom awareness and anticipated patient interval between these countries were most pronounced in highly educated respondents.Conclusion Somewhat paradoxically, the highest awareness of symptoms of cancer and the shortest anticipated patient intervals were found in Denmark, where cancer survival is lower than in Sweden. Thus, it appears that these differences in symptom awareness and anticipated patient interval do not help explain the cancer survival disparity between Denmark and Sweden.

Accumulation of polychlorinated biphenyls in fish and assessment of dietary exposure: a study in Hyderabad City, India

The objective of this study is to determine the concentrations of polychlorinated biphenyls (PCBs) in different fish species collected from fish outlets in the south Indian city of Hyderabad. The samples of fish extracted by using Quick, Easy, Cheap, Effective, Rugged, and Safe (QuEChERS) and concentrations of polychlorinated biphenyls (PCBs, 45 congeners) were determined by gas chromatography-microelectron capture detection (GC-μECD) method. The intake of individual PCB congeners through fish, toxicity equivalence factors (TEFs), hazardous quotient, quantitative assessment, and risk evaluations was estimated in the Indian population. Daily dietary intakes of PCBs at the 95th-percentile-measured concentrations were twice the values of the 50th-percentile-measured concentrations in all socio-economic groups. The dietary intakes of PCBs through fish consumption in middle-income group, low-income group, and industrial laborers (0.023 μg kg(-1) day(-1)), the high-income group (0.031 μg kg(-1) day(-1)), and slum dwellers (0.039 μg kg(-1) day(-1)) exceeded the reference dose. The observed estimated daily intakes (EDIs) of our study for all socio-economic sections (0.0087 μg/kg/day) crossed the cancer benchmark concentration of 0.0003 μg/kg/day. In slum dwellers, the ingestion of fish from freshwater and marine water results in the highest lifetime cancer risks of 4.7 in 100,000 and 7.8 in 100,000, respectively. Ultimately, the concentrations of PCBs were determined high in all of the fish species collected. Risk assessment showed that the fish were highly contaminated with PCBs and may pose health threats to consumers in the city of Hyderabad as well as a lifetime cancer risk.

Awareness of sunburn in childhood, use of sunbeds and change of moles in Denmark, Northern Ireland, Norway and Sweden.

Malignant melanoma (MM) is increasing rapidly in Northern Europe. To reduce incidence and mortality through earlier diagnosis, public awareness of MM is important. Thus, we aim to examine awareness of risk factors and a symptom of MM, and how awareness varies by country and socio-demographic factors in Denmark, Northern Ireland (NI), Norway and Sweden. Population-based telephone interviews using the 'Awareness and Beliefs about Cancer' measure were conducted in 2011 among 8355 adults ≥50 years as part of the International Cancer Benchmarking Partnership Module 2. Prevalence ratios (PRs) with 95% confidence intervals were calculated. In these four countries, lowest awareness was found for 'sunburn in childhood' (63%), whereas awareness was high for 'use of sunbeds' (91%) and 'mole change' (97%). Lack of awareness of 'sunburn in childhood' was more prevalent among respondents from Norway [PR = 1.38 (1.28-1.48)] but less prevalent among respondents from Northern Ireland (NI) [PR = 0.78 (0.72-0.85)] and Sweden [PR = 0.86 (0.79-0.93)] compared with respondents from Denmark. Lack of awareness of 'use of sunbeds' was more prevalent among respondents from Norway [PR = 2.99 (2.39-3.74)], Sweden [PR = 1.57 (1.22-2.00)], and NI [PR = 1.65 (1.30-2.10)] compared with respondents form Denmark. Being a man, age ≥70, living alone, and having lower education, were each independently associated with lack of MM-awareness. The results indicate relatively low awareness of 'sunburn in childhood' as a risk factor for MM, and important disparities in MM-awareness across countries and socio-demographic groups. Improved and more directed initiatives to enhance public MM-awareness, particularly about 'sunburn in childhood', are needed.

Explaining variation in cancer survival between 11 jurisdictions in the International Cancer Benchmarking Partnership: a primary care vignette survey

ObjectivesThe International Cancer Benchmarking Partnership (ICBP) is a collaboration between 6 countries and 12 jurisdictions with similar primary care-led health services. This study investigates primary care physician (PCP) behaviour and...

Smoking is associated with pessimistic and avoidant beliefs about cancer: results from the International Cancer Benchmarking Partnership.

Background:Smoking cessation is the key cancer prevention behaviour for smokers; nonetheless, smokers can still benefit from earlier diagnosis of cancer. However, fewer smokers participate in screening despite their increased risk, which may reflect different beliefs about cancer.Methods:A UK population-representative sample of ⩾50 year-olds (n=6965) was surveyed using the Awareness and Beliefs about Cancer measure. These analyses examine six items on cancer beliefs (e.g., ‘cancer can often be cured'), and four on help-seeking barriers (e.g., ‘I would be too embarrassed').Results:Smokers were more likely to hold pessimistic cancer beliefs than never-smokers or former-smokers on four of six items. For example, 34% agreed ‘a cancer diagnosis is a death sentence', compared with 24% of non/former-smokers (P<0.001). More smokers (18%) than non/former-smokers (11%) would not want to know if they had cancer (P<0.01). The only barrier to symptomatic help-seeking differing by smoking status was ‘worry about what the doctor might find' (36% vs 28%, P<0.01). Associations were independent of demographics, self-rated health and cancer experience.Conclusions:Smokers held more pessimistic and avoidant beliefs about cancer, which could deter early-detection behaviour. A better understanding of these beliefs is needed to increase engagement in early diagnosis by this high-risk group.

80P - Role of Treatment in International Differences in One-Year Mortality From Early Stage Non-Small Cell Lung Cancer: a Tentative Answer From the International Cancer Benchmarking Partnership Study

T. Solomon1, M.D. Peake2, J. Butler3, M.P. Coleman1, W.K. Evans4, E. Jakobsen5, M. Boyer6, T.B. Johannesen7, B. Rachet1 Cancer Research UK Cancer Survival Group, Department of Non-Communicable Disease Epidemiology, London School of Hygiene and Tropical Medicine, London, UK Department of Respiratory Medicine, Glenfield Hospital, Leicester, UK Royal Marsden Hospital, London, UK Juravinski Cancer Centre at Hamilton Health Sciences, Cancer Care Ontario, Toronto, ON, Canada Odense University Hospital, Odense, Denmark Department of Medical Oncology, Sydney Cancer Centre, Royal Prince Alfred Hospital, Sydney, Australia Norwegian Cancer Registry, Oslo, Norway Aim: International differences in lung cancer survival are well known. Using population-based data, we assessed if variation in the provision of treatment may explain some of this variation, focusing on early-stage non-small cell lung cancer (NSCLC) where guidelines recommend resection of curative intent.