Peter Vedsted

The Aarhus statement: improving design and reporting of studies on early cancer diagnosis

Early diagnosis is a key factor in improving the outcomes of cancer patients. A greater understanding of the pre-diagnostic patient pathways is vital yet, at present, research in this field lacks consistent definitions and methods. As a consequence much early diagnosis research is difficult to interpret. A consensus group was formed with the aim of producing guidance and a checklist for early cancer-diagnosis researchers. A consensus conference approach combined with nominal group techniques was used. The work was supported by a systematic review of early diagnosis literature, focussing on existing instruments used to measure time points and intervals in early cancer-diagnosis research. A series of recommendations for definitions and methodological approaches is presented. This is complemented by a checklist that early diagnosis researchers can use when designing and conducting studies in this field. The Aarhus checklist is a resource for early cancer-diagnosis research that should promote greater precision and transparency in both definitions and methods. Further work will examine whether the checklist can be readily adopted by researchers, and feedback on the guidance will be used in future updates.

Delay in diagnosis: the experience in Denmark

Background:Denmark has poorer 5-year survival rates than many other Western European countries, and cancer patients tend to have more advanced stages at diagnosis than those in other Scandinavian countries. Part of this may be due to delay in diagnosis. The aim of this paper is to give an overview of the initiatives currently underway to reduce delays.Methods:Description of Danish actions to reduce delay.Results:Results of surveys of patient-, doctor- and system-related delays are presented and so are the political initiatives to ensure that cancer is seen as an acute disease.Conclusion:In future, fast-track diagnosis and treatment will be provided for suspected cancers and access to general diagnostic investigations will be improved. A large national experiment with cancer seen as an acute disease is currently being implemented, and as yet the results are unknown.

Time intervals from first symptom to treatment of cancer: a cohort study of 2,212 newly diagnosed cancer patients

BackgroundDelay in diagnosis of cancer may worsen prognosis. The aim of this study is to explore patient-, general practitioner (GP)- and system-related delay in the interval from first cancer symptom to diagnosis and treatment, and to analyse the extent to which delays differ by cancer type.MethodsPopulation-based cohort study conducted in 2004-05 in the County of Aarhus, Denmark (640,000 inhabitants). Data were collected from administrative registries and questionnaires completed by GPs on 2,212 cancer patients newly diagnosed during a 1-year period. Median delay (in days) with interquartile interval (IQI) was the main outcome measure.ResultsMedian total delay was 98 days (IQI 57-168). Most of the total delay stemmed from patient (median 21 days (7-56)) and system delay (median 55 days (32-93)). Median GP delay was 0 (0-2) days. Total delay was shortest among patients with ovarian (median 60 days (45-112)) and breast cancer (median 65 days (39-106)) and longest among patients with prostate (median 130 days (89-254)) and bladder cancer (median 134 days (93-181)).ConclusionSystem delay accounted for a substantial part of the total delay experienced by cancer patients. This points to a need for shortening clinical pathways if possible. A long patient delay calls for research into patient awareness of cancer. For all delay components, special focus should be given to the 4th quartile of patients with the longest time intervals and we need research into the quality of the diagnostic work-up process. We found large variations in delay for different types of cancer. Improvements should therefore target both the population at large and the specific needs associated with individual cancer types and their symptoms.

The expanding role of primary care in cancer control

The nature of cancer control is changing, with an increasing emphasis, fuelled by public and political demand, on prevention, early diagnosis, and patient experience during and after treatment. At the same time, primary care is increasingly promoted, by governments and health funders worldwide, as the preferred setting for most health care for reasons of increasing need, to stabilise health-care costs, and to accommodate patient preference for care close to home. It is timely, then, to consider how this expanding role for primary care can work for cancer control, which has long been dominated by highly technical interventions centred on treatment, and in which the contribution of primary care has been largely perceived as marginal. In this Commission, expert opinion from primary care and public health professionals with academic and clinical cancer expertise—from epidemiologists, psychologists, policy makers, and cancer specialists—has contributed to a detailed consideration of the evidence for cancer control provided in primary care and community care settings. Ranging from primary prevention to end-of-life care, the scope for new models of care is explored, and the actions needed to effect change are outlined. The strengths of primary care—its continuous, coordinated, and comprehensive care for individuals and families—are particularly evident in prevention and diagnosis, in shared follow-up and survivorship care, and in end-of-life care. A strong theme of integration of care runs throughout, and its elements (clinical, vertical, and functional) and the tools needed for integrated working are described in detail. All of this change, as it evolves, will need to be underpinned by new research and by continuing and shared multiprofessional development.

Differences in cancer awareness and beliefs between Australia, Canada, Denmark, Norway, Sweden and the UK (the International Cancer Benchmarking Partnership): do they contribute to differences in cancer survival?

Background:There are wide international differences in 1-year cancer survival. The UK and Denmark perform poorly compared with other high-income countries with similar health care systems: Australia, Canada and Sweden have good cancer survival rates, Norway intermediate survival rates. The objective of this study was to examine the pattern of differences in cancer awareness and beliefs across these countries to identify where these might contribute to the pattern of survival.Methods:We carried out a population-based telephone interview survey of 19 079 men and women aged ⩾50 years in Australia, Canada, Denmark, Norway, Sweden and the UK using the Awareness and Beliefs about Cancer measure.Results:Awareness that the risk of cancer increased with age was lower in the UK (14%), Canada (13%) and Australia (16%) but was higher in Denmark (25%), Norway (29%) and Sweden (38%). Symptom awareness was no lower in the UK and Denmark than other countries. Perceived barriers to symptomatic presentation were highest in the UK, in particular being worried about wasting the doctors time (UK 34%; Canada 21%; Australia 14%; Denmark 12%; Norway 11%; Sweden 9%).Conclusion:The UK had low awareness of age-related risk and the highest perceived barriers to symptomatic presentation, but symptom awareness in the UK did not differ from other countries. Denmark had higher awareness of age-related risk and few perceived barriers to symptomatic presentation. This suggests that other factors must be involved in explaining Denmarks poor survival rates. In the UK, interventions that address barriers to prompt presentation in primary care should be developed and evaluated.

Time to diagnosis and mortality in colorectal cancer: a cohort study in primary care

Background:The relationship between the diagnostic interval and mortality from colorectal cancer (CRC) is unclear. This association was examined by taking account of important confounding factors at the time of first presentation of symptoms in primary care.Methods:A total of 268 patients with CRC were included in a prospective, population-based study in a Danish county. The diagnostic interval was defined as the time from first presentation of symptoms until diagnosis. We analysed patients separately according to the general practitioners interpretation of symptoms. Logistic regression was used to estimate 3-year mortality odds ratios as a function of the diagnostic interval using restricted cubic splines and adjusting for tumour site, comorbidity, age, and sex.Results:In patients presenting with symptoms suggestive of cancer or any other serious illness, the risk of dying within 3 years decreased with diagnostic intervals up to 5 weeks and then increased (P=0.002). In patients presenting with vague symptoms, the association was reverse, although not statistically significant.Conclusion:Detecting cancer in primary care is two sided: aimed at expediting ill patients while preventing healthy people from going to hospital. This likely explains the counterintuitive findings; but it does not explain the increasing mortality with longer diagnostic intervals. Thus, this study provides evidence for the hypothesis that the length of the diagnostic interval affects mortality in CRC patients.

Are the serious problems in cancer survival partly rooted in gatekeeper principles? An ecologic study

BACKGROUND It is puzzling to note that British and Danish citizens have a poorer cancer prognosis than citizens from other countries, and this study hypothesises that their low cancer survival could be partly rooted in the gatekeeper function undertaken by general practice in these two countries. AIM To test the association between principles of gatekeeper systems and cancer survival. DESIGN AND SETTING An ecologic study with data from EUROCARE-4 and primary care structure. METHOD This hypothesis was tested in an ecologic study on the association between three principles of gatekeeper systems and cancer survival in 19 European countries for which valid and full data were available. RESULTS It was found that healthcare systems with a gatekeeper system do have a significantly lower 1-year relative cancer survival than systems without such gatekeeper functions. CONCLUSION The possible mechanisms behind this finding are discussed, and while all the positive aspects of gatekeeping are recognised, it is strongly recommended that further research be conducted to confirm or reject the study hypothesis on this possible serious adverse effect of gatekeeping.

Evidence of increasing mortality with longer diagnostic intervals for five common cancers: a cohort study in primary care.

BACKGROUND Early diagnosis is considered a key factor in improving the outcomes in cancer therapy; it remains unclear, however, whether long pre-diagnostic patient pathways influence clinical outcomes negatively. The aim of this study was to assess the association between the length of the diagnostic interval and the five-year mortality for the five most common cancers in Denmark while addressing known biases. METHODS A total of 1128 patients with colorectal, lung, melanoma skin, breast or prostate cancer were included in a prospective, population-based study in a Danish county. The diagnostic interval was defined as the time from the first presentation of symptoms in primary care till the date of diagnosis. Each type of cancer was analysed separately and combined, and all analyses were stratified according to the general practitioners (GPs) interpretation of the presenting symptoms. We used conditional logistic regression to estimate five-year mortality odds ratios as a function of the diagnostic interval using restricted cubic splines and adjusting for comorbidity, age, sex and type of cancer. RESULTS We found increasing mortality with longer diagnostic intervals among the approximately 40% of the patients who presented in primary care with symptoms suggestive of cancer or any other serious illness. In the same group, very short diagnostic intervals were also associated with increased mortality. Patients presenting with vague symptoms not directly related to cancer or any other serious illness had longer diagnostic intervals and the same survival probability as those who presented with cancer suspicious/serious symptoms. For the former, we found no statistically significant association between the length of the diagnostic interval and mortality. CONCLUSION In full coherence with clinical logic, the healthcare system instigates prompt investigation of seriously ill patients. This likely explains the counter-intuitive findings of high mortality with short diagnostic intervals; but it does not explain the increasing mortality with longer diagnostic intervals. Thus, the study provides further evidence for the hypothesis that the length of the diagnostic interval affects mortality negatively.

Patient delay in cancer studies: a discussion of methods and measures

BackgroundThere is no validated way of measuring the prevalence and duration of patient delay, and we do not know how people perceive and define the time intervals they are asked to report in patient delay studies. This lack of a validated measure hampers research in patient delay and is counterproductive to efforts directed at securing early diagnosis of cancer.DiscussionThe main argument of the present paper is that current studies on patient delay do not sufficiently consider existing theories on symptom interpretation. It is illustrated that the interpretation of bodily sensations as symptoms related to a specific cancer diagnosis is embedded within a social and cultural context. We therefore cannot assume that respondents define delay periods in identical ways.SummaryIn order to improve the validity of patient delay studies, it is suggested that research be strengthened on three counts: More research should be devoted to symptom interpretation processes, more research should seek to operationalise patient delay, and, importantly, more research is needed to develop valid instruments for measuring patient delay.

Participation in cancer rehabilitation and unmet needs: a population-based cohort study

PurposeTo investigate associations between cancer survivors’ sex, age, and diagnosis in relation to their (1) need for rehabilitation, (2) participation in rehabilitation activities, and (3) unmet needs for rehabilitation in a 14-month period following date of diagnosis.MethodsA population-based cohort study was performed on incident cancer patients diagnosed from 1 October 2007 to 30 September 2008. Fourteen months after diagnosis, participants completed a questionnaire developed to measure the aspects of rehabilitation. Logistic regression analyses were used to explore the association between sex, age, and diagnosis, and the outcome variables for rehabilitation.ResultsA total of 3,439 patients participated, yielding an overall response rate of 70%. One third of the cancer patients reported a need for physical rehabilitation and one third for psychological rehabilitation. Half of the patients participated in at least one activity. Unmet needs were most often reported in psychological, sexual, and financial areas. Women expressed more needs, participated more often in rehabilitation activities, and had, to a higher extent, their emotional needs fulfilled. Breast cancer patients participated more often in physical rehabilitation. Elderly who expressed rehabilitation needs more often had them unresolved.ConclusionsA substantial variation in rehabilitation needs, participation in activities, and unmet needs in relation to sex, age, and cancer type was observed. Cancer care ought to systematically address the wide range of needs in all groups through integration of systematic needs assessment and targeted supply of offers.