What this paper adds?
Over a third of lung cancer patients are diagnosed as emergencies.
The emergency route to diagnosis is sub-optimal, associated with late-stage diagnosis and poor survival.
The study finds that most emergency presentations reflect that patients by-pass primary care.
In the period 2006–2013, close to 15% of practices show higher than expected proportions of emergency presentation.
There are no General Practice characteristics predictive of unexpectedly high or low levels of emergency presentation.
Background
New diagnoses of cancer through emergency hospital presentation are often related to delayed diagnosis [
1]. In England, they represent almost a quarter of new cancer diagnoses [
2]. Patients diagnosed with cancer through emergency presentation usually have advanced tumour stage [
3] and lower one-year survival than those presenting via other routes [
2,
4]. Improving early diagnosis of cancer was a priority of the Cancer Reform Strategy [
5] and is now part of the six strategic priorities of the 2015–20 Strategy for England [
6].
Delay in diagnosis can occur at patient, primary care, and/or secondary care levels [
7,
8]. For example, delays may occur when a patient does not recognise cancer symptoms or seek health care, when a healthcare practitioner misinterprets the symptoms, or does not investigate or refer the patient for further investigation, or when there is long waiting time to be seen by a specialist, leading to delay in initiation of the appropriate treatment.
In addition to patient and doctor delays, the organisational structure of healthcare systems influences care seeking. A qualitative study from Denmark hypothesised that the role of general practitioners (GPs) as gatekeepers to the rest of the healthcare system and providing continuity in doctor-patient relationship may influence care seeking decisions [
9]. The UK and Denmark, which both have comprehensive gatekeeper and list systems, have significantly lower one-year relative survival from cancer than countries such as Sweden or Canada, which have less stringent gatekeeper and list systems [
9,
10].
Over 30,000 people are diagnosed with lung cancer each year in England. Lung cancer remains the leading cause of cancer deaths in England in both men and women [
11]: one-year net survival is 33.2% in men and 38.9% in women, and 5-year net survival is as low as 11.1% in men and 15% in women [
12].
There is no national screening programme to identify lung cancer at an early stage in the UK. However, unlike most other common cancers, patients can be investigated in primary care by chest X-ray, which means that general practitioners have access to an additional diagnostic test. The National Institute for Health and Care Excellence (NICE) guidelines for referral or request of chest X-ray are based on unexplained and persistent symptoms or signs such as cough, weight loss, hoarseness, etc. [
13]. Despite the availability of diagnostic investigation in primary care, a high proportion of lung cancer patients are still not referred according to the recommended and most straightforward route to a respiratory clinic for diagnosis [
14].
A retrospective analysis of Hospital Episode Statistics (HES) between 1999 and 2006 showed that 52% of patients with lung cancer in England were admitted as emergencies. Such admissions were more common in women, older patients and patients from deprived areas [
15]. In 2007, it was estimated using routine data (cancer registry, HES and National Cancer Waiting Times (NCWT)), that 38% of patients in England were diagnosed with lung cancer through emergency presentation [
2]. Despite small improvements in recent years [
16], late diagnosis and emergency presentation remain a major concern in lung cancer.
The reasons for delay in diagnosis and emergency presentation are complex and multi-factorial. Patients characteristics (sex, age, deprivation, place of residence) [
17,
18] and cancer awareness may influence timeliness of presentation. Nevertheless, primary care health professionals have an important role in early diagnosis and there have been calls to better understand the primary care factors associated with emergency presentations [
19] as well as their regional variations [
18].
Aim and objectives
We aimed to describe and explain the heterogeneity in proportions of lung cancer diagnoses through emergency presentation – thereby referred to as proportions of EP - between practices in 2006–2013. First, we explored the variability in the national proportions of three types of emergency presentations over time. Then, we depicted the variation in proportions of emergency presentation by practice. Finally, we explored the association between practice characteristics and proportions of emergency presentations adjusting for variations by patient characteristics.
Discussion
The proportion of lung cancer presenting as an emergency decreased slightly in England between 2006 and 2013 and was accompanied by a steep drop in GP-led emergency referrals. By 2013, two thirds of emergency presentations were patient led, of whom 27% were in the most deprived quintile and 73% were late stage (Additional file
2: Table S2). There was no consistency with respect to the characteristics of general practices which exhibit high proportions of EP: for each year between 2006 and 2013, a different set of only 5% of practices had higher than expected levels of EP. This sheds some light as to why we cannot build a practice profile predictive of EP and demonstrates the importance of a system wide rather than targeted approach to reducing emergency presentations.
Trends in sub-types of EP
Although the proportion of lung cancer emergency presentations decreased slightly over the time period examined, the number of patients diagnosed every year increased, resulting in a stable number of emergency cases per year (Table
1). GPs’ role as gate keepers for secondary care aims to enhance the appropriateness of setting for patient care and to reduce unnecessary pressure on secondary care [
28]. Nonetheless our results suggest that two-thirds of patients presenting as EP by-pass primary care. A better understanding is needed about the motivations and the previous primary care pathway that led these patients to access care via A&E. This high proportion, combined with (a) the concomitant decrease in GP-led EP proportion and increase in patient-led EP proportion, and (b) the increasing proportion of EP from A&E of another healthcare provider, is noteworthy. Our results cannot be attributed to any change in definition of these sub-types of EP, because definitions did not change between 2006 and 2013.
We also show that the least deprived patients are more likely to be referred by their GP to A&E compared to the most deprived. The extent to which this might be driven by more frequent GP attendance, higher levels of health literacy or other factors could not be explored in this analysis.
Patterns of EP by practice and practice characteristics
We found that the high proportion of EP is not the result of a few practices with very abnormal patterns of EP. Rather, it is the combined effect of the great majority of practices with proportions of EP around an already high national average. An illustration of the extent of this problem is that, to reduce the national average of EP from 37.6 to 30% in 2010, 662 practices with observed highest proportions of EP (9% of all practices diagnosing lung cancer patients that year) would need to have a proportion of EP of 0%. This numerical example illustrates that a targeted intervention on a few practices [
29] may have little effect on the national proportions. Furthermore, the targeted practices would change every year.
Previous research identifies practice characteristics associated with increased EP. These include poorer access to general practice, measured as the proportion of patients who were able to obtain an appointment on their last attempt [
30], and lower proportions of patients who had confidence and trust in their doctor [
31], and discontinuity in consultation [
32]. However, none of these analyses include an evaluation of the predictive performance of the selected model and variables, which reduces the utility of the findings. Our research suggests that none of the GP practice characteristics available for national-level analysis satisfactorily predict EP. Our results are in line with a review of 22 studies investigating EP in lung and colorectal cancer patients, concluding that no study found clear evidence between primary care factors and EP [
33]. Similarly in 2001, it was established that emergency admission of colorectal cancer was not associated with present aspects of primary health care organization [
34].
A recent review on the evidence about emergency presentations [
35] highlights that, although the mechanisms leading to EPs are not fully understood, there is still a substantial proportion of avoidable emergency presentations. Avoidable EPs are hypothesised to result from several successive or independent “omissions”, on the part of the patients and GPs, with respect to their actions towards signs and symptoms of cancer [
36]. Patients may lack knowledge of cancer symptoms, or delay seeking health advice or investigations [
37]. Nation-wide campaigns such as “Be clear on cancer” aim to tackle these causes of delay. In addition, primary care practitioners may overlook cancer symptoms, delay tests, investigations or referrals to secondary care [
38]. This may in part be associated with GPs and patients prioritising other complaints: some EPs are the result of the combination of several factors, including the presence of other diseases [
39].
Strengths and limitations
To our knowledge, this study is the most comprehensive analysis on the associations between the general practice characteristics and EP. We linked administrative and survey data to records of cancer patients from the well-established population-based Cancer Registry for England. We adopted different analytical approaches to investigate those associations, i.e. exploratory and confirmatory structural equation modelling approach, as well as two model selection strategies. We finally looked at the predictive performance of the selected models and factors.
However our research is limited by our lack of information on the extent of primary care involvement in ‘patient-led’ attendances. This meant that we were unable to estimate the proportion of patients coded as patient-led EP who were sent to A&E by their GPs. These patients may explain some of the rise in patient-led EP, and the sudden increase from 2011 in proportions of patients referred to A&E via “the A&E department of another healthcare provider”. Furthermore, previous research which linked CPRD (Clinical Practice Data Link) to cancer registrations for colorectal cancer [
40] showed that although primary care use and access was similar between patients with and without EP of their colon cancer, EP patients were less likely to have red-flag symptoms recorded in primary care in the year prior to the diagnosis.
GP practices only see a limited number of lung cancer patients every year, leading to high variability in their proportions of EP. Nonetheless the methods used in this paper to detect associations have a good power since the sample sizes remain a lot larger than the number of parameters, and in all cases the associations exhibited very low significance level. Furthermore, even when all types of emergency presentations are studied, there is limited evidence for association [
32].
Finally, anonymised GPPS information does not allow us to study the experience of patients who by-pass their GPs compared with those who do not. Moreover, we do not know the extent to which communication barriers between GPs and secondary care; the wish to expedite diagnosis, particularly in patients presenting at a later stage; the lack of clear ‘appropriateness’ guidelines, or other factors, drive GPs to send patients directly to emergency departments.