General practitioners (GPs) have a key role in cancer detection as the usual first point of contact for patients with potential cancer symptoms. Nevertheless, there is limited work that investigates their perceptions of their role in the early detection of cancer. To address this gap, we aimed to gain an in-depth understanding of cancer diagnosis from the perspective of GPs.
Individual face-to-face semi-structured interviews were conducted with 55 GPs from the North and North East of England and Greater London. All interviews were recorded and professionally transcribed verbatim. Repeated reading and co-coding engendered systematic thematic analysis across the interview material.
Three main themes emerged from the analysis of our data. First, we identified the burden of early cancer detection in general practice, both related to the anxiety and symptoms patients bring to GPs and the need for GPs to recognise patterns of cancer symptoms and refer appropriately; second, this burden is intensified by a perceived fragmentation of services within the National Health Service (NHS); and third, it is made more complex by the interface between general practice and public health.
GPs occupy a challenging but pivotal role in cancer detection. It is crucial that this role be supported by policy and research.
Diagnosing cancer when it is at an early stage is important, as the stage of disease at diagnosis is related to survival for many cancers. Because of this, there has been increasing interest in how patients and professionals recognise cancer symptoms (Department of Health, 2007), which has resulted in an increased interest in all stages of the pathway to diagnosis. This pathway is complex; timely diagnosis is dependent on patients identifying a new symptom or something different, interpreting that change as something about which they should see their doctor (Macleod et al, 2009), negotiating the system to obtain an appointment and then the general practitioner (GP) recognising the symptoms as a presentation of potential cancer. This pathway is not as linear as initial models of the pathway to diagnosis suggested (Andersen et al, 1995). More recent models of the pathway, based on literature review (Walter et al, 2012), have suggested that the process of patient appraisal and self-management continues after the decision to consult a health-care professional takes place and interacts with the health-care professional in turn appraising, investigating and referring the patient for further investigation. Central to this process, however, are two parties: the patient and the health-care professional, who in a UK context is most commonly a GP.
In addition, complexity is added in the United Kingdom (and similar health-care systems) owing to the role of the GP in ‘gate-keeping’ access to referral to specialist care (Vedsted and Olesen, 2011). The interaction between the GP and the patient can therefore be seen as the front line for contact between public/patient and the National Health Service (NHS) with respect to the understanding of symptoms, presentation and GP response, which Walter et al (2012) state form the ‘key determinants of outcomes in cancer’. Primary care is therefore the focus of considerable research and policy activity in the area of cancer symptom recognition and referral. However, although work to date has included a GP perspective in cancer-specific studies and has focussed on cancer detection in primary care, including, for example, the development of algorithms to assist with risk stratification of symptom presentation (Hamilton et al, 2013; Hippisley-Cox and Coupland, 2013; Stapley et al, 2013; Walker et al, 2013), there is limited work that investigates GPs’ understanding of patients’ awareness of cancer symptoms or on GPs’ views of their own role in early detection.
An exception to this is a focus group study and national survey conducted by Daly and Collins (2007) of GPs in Ireland who identified barriers to early diagnosis within their health-care system. Their findings indicated that late diagnosis was related to patient delay, lack of primary care access to diagnostic investigations, barriers to secondary care referral, lack of clarity around cancer screening, poor communication between primary and secondary care and inequity of services for patients who are unable to pay for private care and treatment. Daly and Collins (2007) concluded that, at the time of their study, general practice was not adequately resourced to meet the demands of earlier cancer detection. More recently, Cook et al (2014) have studied the views of primary care staff from six practices in the North West of England with regard to the promotion to patients of earlier symptom presentation and the management of risk in cancer detection and referral in primary care. These authors highlighted their respondents’ concern at the lack of understanding on the part of policymakers and those implementing cancer initiatives of the impact of ‘inherent uncertainty, organisational change and competing priorities’ within primary care. It seems appropriate therefore to further study this group of professionals who are at the front line in cancer detection.
Our overall aim in conducting this study was to obtain an in-depth understanding of cancer diagnosis from the perspective of GPs, and to develop a framework for conceptualising the potential of the GP’s role to improve cancer recognition and referral. The objectives included identifying GPs' understanding of their role with respect to cancer awareness, screening and early detection. We also examined attitudes to awareness and early diagnosis, including the extent to which prompt presentation with symptoms is welcomed on the one hand or considered to be a ‘worried well' burden on resources. We also explored participants’ understandings their gate-keeping role and its impact on early cancer diagnosis. Further in recognition that cancer detection is not merely about symptom presentation, we explored attitudes to screening and the role of primary care in supporting screening coverage to consider whether there is scope for enhancing the role of primary care in promoting cancer screening coverage.
Materials and methods
As our aim was to explore how the role of GPs could be maximised with respect to the early diagnosis of cancer, we considered that in-depth semi-structured interviews with GPs were the most appropriate research technique to capture this information. Interviews were conducted by the first author, and the majority were carried out in participants’ workplaces. A topic guide was used, and each interview was digitally recorded (with the permission of the interviewee) and professionally transcribed verbatim. The main topics explored were as follows: the GP’s role in the early detection of cancer, the role of primary care with respect to cancer awareness, the role of GPs with respect to cancer screening, and NHS changes and policy issues. Each topic entailed a series of open-ended questions and additional probes. GPs’ responses were followed up as appropriate (Supplementary Online Material 1). GPs were also asked to describe the demographics of their patient populations. We accessed the National General Practice Profiles (NGPP) for data on size of practice, deprivation score and ethnic make-up (Supplementary Online Material 2). The duration of the interviews ranged between 60 and 75 min. GPs were remunerated for their time.
Participants were drawn from 16 former primary care trusts (11: North and North East England; and 5: Greater London). To aid recruitment, colleagues in local Primary Care Research Networks contacted practices on behalf of the research team with information regarding the study. Fifty-five GPs responded and were contacted by the researcher to arrange interview dates and times. Interviews were conducted from May 2012 to April 2013.
Analysis of the interview data was guided by the research objectives and was ongoing throughout the fieldwork. We adopted an iterative approach, whereby themes were identified and fed back into the data collection process. This method of moving between formulating theory and analysing data facilitated a better understanding of the GP’s role in early cancer diagnosis. The transcripts were double-coded (TG, UM) and the research team held regular meetings to discuss the emergent themes from the fieldwork material. Thematic analysis explored relationships between patterns, categories and descriptive themes (Brewer, 2000). To introduce transparency, a systematic approach to data analysis was used, engaging detailed familiarisation, identification and indexing of key themes; contextualising of themes in relation to the framework of cancer diagnosis in primary care; and interpreting them within the context of theoretical themes relevant to the interview material. We then compared across cases by highlighting potential similarities and differences, and finally related these to characteristics of the respondent that could be reasonably justified as an explanation that mediated experience, such as demography of practice (Silverman, 2009). This process involved understanding the meaning of actions, beliefs, attitudes and views from the range and frequency of participants’ narratives, as well as consistent cross-referencing, which looked for similarities and differences within the sample. This enabled patterns of views and perceptions to be identified, comparisons made and contradictions to be explored. Data were uploaded to NVivo 10, and a coding strategy and coding framework were developed to facilitate data retrieval and comparative analysis. Records of data collection and analysis were kept at all stages.
The study was submitted to the Hull York Medical School Research Ethics Committee for ethical approval and to the relevant NHS R&D departments for research governance approval. The main ethical issues related to confidentiality of participants and to storage of data. We assured our participants of confidentiality, and data have been anonymised accordingly. All data from the fieldwork have been stored securely. Pseudonyms denote chronology of interview/GP gender/NGPP deprivation score.
Results are presented under the following three principal themes: (1) symptom recognition and referral in general practice; (2) GPs’ perceptions of the fragmentation of NHS services and care; and (3) primary care/public health interface. Each principal theme has a series of subthemes; illustrative data are presented in Box 1, Box 2 and Box 3. The themes and subthemes are summarised in Box 4.
Symptom recognition and referral by GPs
This principal theme relates to how cancer plays a major part in GPs’ daily practice. This is owing to public perceptions of cancer that are brought to GPs’ attention and discussed during consultations, the recognition and referral of symptoms and barriers to referral.
Public perceptions of cancer. GPs were aware that they would identify only a small number of new cancer patients during their professional lifetime. However, interview data indicate that cancer took up a considerable amount of participants’ time and resources. Cancer as a potential diagnosis, rather than a disease, was substantial in terms of public concern and, as a result of this, patient anxiety and GP time. Participants across the sample indicated how late presentation of symptoms was often linked to patients’ socio-economic and socio-cultural circumstances. This was an issue GPs struggled with because the outcome was often later presentation, referral and diagnosis, and thus higher mortality rates for practices in these areas.
Recognition of symptoms. Participants were aware that many symptoms patients presented with that were indicative of cancer would prove to be non-malignant but at the same time felt under pressure not to ‘miss’ potential cancer symptoms. Data show the uncertainty that surrounds non-specific symptoms and the skill needed in filtering out patients who might be at risk of cancer from those presenting with self-limiting problems.
Gatekeeper role. Participants valued their gatekeeper role and perceived that the GP’s skill was to identify those patients in need of further investigation or referral from those who could be managed within primary care. The ability to perform this role adequately was perceived to be dependent on the quality of the GP/patient relationship and the GP’s role as patients’ advocate. Participants perceived that their role was undergoing change owing to NHS reforms, and that there was some anxiety regarding how the joint responsibilities of patient advocacy and resource management would play out in practice.
Referral. Participants relied on guidelines and the 2-week-wait (2WW) urgent referral routes available for potential cancer symptoms in England (National Institute for Health and Clinical Care Excellence (NICE), 2005). Although GPs valued 2WW, they also highlighted its limitations when symptoms do not meet guideline criteria, and referral criteria then acted as a barrier. Several GPs called for a generic route for suspicious symptoms. GPs had strategies to overcome some of the barriers, although this situation was managed more easily when there were opportunities for dialogue with secondary care colleagues. Participants perceived that the primary/secondary care relationship had changed as cancer care at secondary level became more specialised.
Fragmentation of NHS services and care
Our second principal theme focuses on changes in primary care provision and how these affected GPs’ practice with regard to continuity of care and the perceived impact of organisational change on GP practice.
Continuity of care. GPs recognised the significance of being the first port of call for patients, and commented that this was key to establishing patients’ trust in the GP and primary care more generally. They perceived that the availability of ports of call other than the GP practice affected the provision of continuity of care to patients, and indicated how multiple points of provision could have a negative impact on the detection of cancer symptoms and timeliness of diagnosis.
Organisational change. Participants were concerned about changes to the GP remit – for example, the introduction of Clinical Commissioning Groups (CCGs) that include experienced GPs in their consortia. Participants felt that their role as patient advocate was one of the strengths of primary care, and felt that this role might be compromised by recent reorganisation of primary care and increased responsibility for resource management, which they felt might negatively affect referral decisions. GPs also perceived that responsibility for increased administrative tasks would reduce surgery time with patients.
Primary care/public health interface
In this final section, we contextualise our findings in relation to GPs’ perceptions of the wider public health field with regard to cancer screening programmes and awareness-raising initiatives.
Cancer screening. Participants were unified in their views about the criteria that screening programmes should fulfil. Although overall support for screening was evident, participants’ perceptions of some programmes were affected by conflict among experts in the field, in particular mammography (although not screening as such, testing for prostate cancer also caused anxiety). All participants, however, said that they promoted screening to their patients, and the majority perceived that GP endorsement of screening would increase patient compliance. Participants commented on the challenges of managing patients’ responses to, and understandings of, screening.
Awareness-raising initiatives. Participants commented positively on awareness-raising campaigns and welcomed attempts to educate the public about the signs and symptoms of cancer. Although the majority of participants were mostly of the view that educating the public about cancer symptoms via campaign initiatives is a worthwhile endeavour, they simultaneously commented on some of the negative consequences of these owing to increased numbers of consultations, time pressures and limited resources. Some GPs also thought that the push to identify symptoms at an earlier stage could result in unforeseen challenges. Several participants noted that public health initiatives had more impact on members of the public already sensitised to health issues, as well as patients who they termed the ‘worried well’. All of our respondents articulated a commitment to patient ‘safety netting’ and to educating patients around cancer warning signs and symptoms.
GP role in raising awareness. There was agreement across the study sample that awareness-raising initiatives at times had little effect on some members of the public and they gave their views on who these groups and individuals might be. The majority of participants felt that their role in raising awareness was practice-based, that is, they perceived the GP’s role in enhancing patients’ awareness of the signs and symptoms of cancer would be best achieved within the confines of the surgery and that GP/patient interactions would support public health messages. A small number of participants saw a more proactive role for themselves or for primary care more generally in order to engage patients who, for a variety of reasons, might not be reached by public health initiatives.
The aim of this article was to emphasise the role that GPs have at a time of great upheaval within the NHS because for the most part they are the first port of call for the general public. The strength of this work is that it is the largest in-depth study of GPs’ understandings and perceptions of their role in early cancer detection. We have presented findings that relate to all aspects of this task, and we have done so at a time when many initiatives to improve early diagnosis were taking place in England. The limitations relate to the generalisability of qualitative research, and that in seeking to present an overview of our data to provide insight into the breadth of activity, we have been unable to present some of the depth relating to particular aspects of the GP role.
Findings from our study show how the potential diagnosis of cancer was a concern for our participants that absorbed much of their time. It is the case, however, that inherent uncertainties underscore cancer symptom recognition and referral decisions in primary care; the skill required in the management of risk and uncertainty has been noted by others (O’Riordan et al, 2011; Round et al, 2013; Cook et al, 2014). Our participants were aware that the majority of patients who present with potential cancer symptoms will have a diagnosis other than cancer (Macleod et al, 2009; Richards, 2009; Jensen et al, 2014). Clearly, the detection of cancer in primary care is complex, and it can involve several appointments and investigations (Walter et al, 2012). Although all participants welcomed the 2WW criteria, references to ‘gut instinct’ were evident across the sample and had a role in GPs’ ability, in the absence of red flag symptoms, to identify patients in need of further investigation (to either rule in or rule out cancer).
Stolper et al (2010) have commented on the notion of uncertainty in general practice when GPs are faced with ‘complicated, vague problems’. The GPs in our study stressed that patients with vague symptoms, which over time turned out to be those of cancer, were more likely to receive a later diagnosis because their symptoms did not meet urgent referral criteria. GPs also applied a ‘watch and wait’ safety-net approach to some patients because they were aware that, as Ely et al (2011) attest, in primary care ‘diagnosis often emerges over time’ (Walter et al, 2012). To ease this situation, GPs called for a generic referral route for suspected cancer symptoms, alongside increased opportunity for communication with secondary care colleagues.
Round et al (2013) comment that fragmentation within primary care has occurred because of increased numbers of part-time and salaried GPs and the use of locum cover. They identified this as a root cause of the demise of continuity of care because of the ‘difficulty in seeing a consistent doctor’. The GPs in our study were a mix of full- and part-time partners and salaried GPs, and data indicate that they valued and made efforts to provide continuity of care for their patients. Their concern in this regard was, however, that walk-in centres and ports of call other than GP surgeries have the potential to erode continuity of care. Round et al (2013) conclude that ‘early diagnosis is the result of the best interaction between patients and their GP’; our participants’ views echo this assertion, albeit from a different standpoint. Some of the challenges that participants felt they faced also related to recent organisational changes – for example, an increased responsibility for resource management was felt to be at odds with the GP’s role as patient advocate.
The strengths of primary care were evident when GPs provided in-depth knowledge of their patient populations and were able to specify which patients were most likely to receive a later diagnosis of cancer. These data highlighted the disparities in health outcomes across socio-economic and socio-cultural groups and individuals, findings that are consistent with the work of others (Forest et al, 2013; Nicolson et al, 2014). It is right, therefore, that public health initiatives encourage people to contact their GPs if worrying symptoms manifest. It is worth noting, however, that GPs practising in more affluent areas were most likely to make comments regarding increased numbers of consultations, whereas those working in more deprived areas perceived that many of their patients were less affected by public health initiatives. It is also key, therefore, that public health initiatives are targeting ‘hard to reach’ areas (National Institute for Health and Clinical Care Excellence (NICE), 2007; Department of Health, 2011), although in this regard it is well to be aware of the arguments others have made that public health campaigns can at times perpetuate health inequalities for some patients in underserved patient populations (Capewell and Graham, 2010; Lorenc et al, 2013).
Our findings demonstrate that the burden to GPs of cancer detection is not in the number of patients diagnosed, but in the number of patients they see with potential cancer symptoms who need to be assessed by them and the appropriate action taken. The fact that GPs are able to respond appropriately to their patients is therefore vital, through reassurance, diagnostic investigation before/at the same time as referral and referral routes for non-specific yet suspicious symptoms, all of which require adequate support and resources, as well as opportunities for inter-professional dialogue. Vedsted and Olesen (2011) argue that ‘general practice can provide timely and comprehensive cancer diagnosis when given the proper conditions, for example, diagnostic work-up and referral of patients.’ Our findings further substantiate these authors’ claims and provide insight from GPs that these would help in the provision of a more robust approach to earlier cancer recognition and referral in primary care.
Implications for research
Future work with professionals and indeed patients and the public is required to consider the role that professionals could have in addressing the common fear of cancer and how that is related to help-seeking behaviour. In addition, the role of primary care professionals in promoting awareness of cancer symptoms and the cancer screening programmes is worthy of further study.
TG is funded by the Policy Research Unit in Cancer Awareness, Screening and Early Diagnosis. This Unit receives funding for a research programme from the Department of Health Policy Research Programme. It is a collaboration between researchers from seven institutions (Queen Mary University of London, UCL, King’s College London, London School of Hygiene and Tropical Medicine, Hull York Medical School, Durham University and Peninsula Medical School). The research team acknowledges the support of the Primary Care Research Network in identifying participants. We are grateful to all of the GPs who participated in the study. We thank Claire Ward, Hull York Medical School, for her exemplary administrative assistance and Christine Taylor for her skills with transcription.
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Supplementary Information accompanies this paper on British Journal of Cancer website (http://www.nature.com/bjc)
British Journal of Cancer (2015)