Family Practice Vol. 21, No. 3, 299-303
Family Practice Vol. 21, No. 3 © Oxford University Press 2004, all rights reserved.
Less haste more speed: factors that prolong the interval from presentation to diagnosis in some cancers
The University of Sheffield, Institute of Primary Care and General Practice, Community Science Centre, Northern General Hospital, Herries Road, Sheffield S5 7AU and a Kiveton Park Primary Care Centre, Chapel Way, Kiveton Park, Sheffield S26 6QU, UK
E-mail: m.jiwa{at}sheffield.ac.uk
Received 30 June 2003; Revised 6 October 2003; Accepted 7 January 2004.
Jiwa M, Reid J, Handley C, Grimwood J, Ward S, Turner K, Ibbotson M and Thorman N. Less haste more speed: factors that prolong the interval from presentation to diagnosis in some cancers. Family Practice 2004; 21: 299–303.
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Abstract |
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Background. In the UK, the GP is the gatekeeper to specialist services in addition to many other roles. Recently, the GP is also expected to select cases that warrant ‘urgent’ as opposed to ‘routine’ specialist investigation. Failure to refer on the appropriate timetable may have implications for timely diagnosis.
Objective. Our aim was to explore the circumstances in which the diagnosis of cancer is delayed with reference to the primary care records and by a structured investigation of clinical records in one practice.
Methods. The study was set in an urban group practice serving a mixed population of deprived and affluent communities. List size was 10 440 patients, with five whole time equivalent partners and three practice nurses. The appointment system was fully computerized and there were no personal lists. Records for all cases with specified common cancers diagnosed since 1990 and still registered in the practice were reviewed. The interval from presentation to referral, referral to diagnosis and presentation to diagnosis was compared for a series of factors including ‘urgent’ referral. The clinical team currently working in the practice conducted a structured review of the case records for the most delayed cases.
Results. Fifty-four cases were listed in the practice. A series of factors were identified as having a bearing on delayed diagnosis, including a reticence on the part of patients to seek to expedite specialist appointments, failures of communication, and patients presenting multiple problems in short general practice consultations. The action plan agreed by the clinical team includes improving the quality of communication with secondary care, follow-up of patients who have been referred for radiological or ultrasound investigation and reviewing patients who fail to attend specialist clinics.
Conclusions. The data imply that delays sometimes result from avoidable errors before and after referral and especially by the patient entering secondary care on the wrong pathway. Improving the patients' experience in health care requires the provider to take a global view of the service. Primary care is not merely a filter but influences and is influenced by policies in other parts of the health care system.
Keywords. Cancer, delay, diagnosis, general practice.
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Introduction |
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Among the plans to modernize the National Health Service (NHS), the UK Department of Health requires GPs to refer any patient within 24 h of suspecting that the clinical picture points to a diagnosis of malignancy. The impact of these so-called 2-week wait referrals on patients is that investigations are expedited. However, if the system is to work to its best advantage, the GP must select cases for urgent specialist investigation from among the many who present with symptoms.1 Research suggests that a series of clinical, educational and process factors impact on outcomes for cancer patients in gastric,2 colorectal,3 bladder,4 oesophageal,5 prostate,6 lung7 and ovarian cancer.8 These relatively uncommon pathologies mimic the more plentiful benign conditions that present to the family practitioner tasked with referring selectively to hospital clinics. In the UK, as in some other countries, the GP is the gatekeeper to specialist services. However, the GP must fulfil many other functions including reassuring the worried well, preventing morbidity and mortality from a variety of physical and psychological conditions, providing health information, maintaining and fostering a positive relationship with patients, and supporting claims for state and private insurance benefits. Presented with a series of agendas, the GP must select cases that warrant urgent specialist assessment, as failure to refer on the appropriate timetable may have implications for timely diagnosis. What has not been explored, with reference to clinicians, are the factors that prolong the interval from presentation to diagnosis.
Complexity theory9 predicts that outcomes in a system are influenced by the nature of the component parts of that system. Increasing the efficiency of one part of a system must be allied to changes in other parts of the system if the output is to improve. The issue of waiting lists in the NHS was considered by Papadopolus and colleagues who applied complexity theory to explain why waiting times have resisted attempts at shortening by introducing piecemeal changes in secondary care.10 In this article, we consider the factors that delay the diagnosis of cancer in primary care with reference to several components of the health care system as recalled by witnesses in primary care referring to medical records.
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Methods |
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We selected relatively common cancers for review including colorectal, upper bowel, gynaecological, genitourinary and lung cancer. A smaller number of cancers at other sites were included; however, we excluded cervical and breast cancer where referral for investigation is significantly influenced by screening measures. A review of the computer and paper records for cases diagnosed since 1990 and listed at one UK general practice surgery was carried out.
The study was set in an urban group practice serving a mixed population of deprived and affluent communities. List size was 10 440 patients, with five whole time equivalent partners and three practice nurses. The appointment system was fully computerized and there were no personal lists.
In addition to date of presentation with symptoms or signs referrable to the relevant system or that sparked the referral for specialist investigation, the date of referral for investigation by the relevant specialist and date of definitive diagnosis, the following data were collected by a GP and audit clerk in each case. (i) Referred ‘urgently’ or otherwise. Before 2000, this means a referral was marked ‘urgent’ and faxed by the referring doctor; after this date, ‘urgent’ referrals were usually but not always channelled under the newly introduced ‘2-week’ wait criteria.11 (ii) Referred within or up to 30 days of presentation and referred after 30 days of presentation with symptoms referrable to the relevant system. (iii) Intimate examination performed prior to referral (colorectal, gynaecological and genitourinary cancers). It was anticipated that the need to arrange for chaperons to be present during intimate examinations may add to the delay in the assessment of patients before referral as some patients with vague symptoms may be asked to return for another consultation when chaperons are available.
The intervals from presentation to referral, referral to diagnosis and presentation to diagnosis were compared for these factors. Cases were divided into six equal groups according to increasing length of the interval from presentation to diagnosis (measured in days). The entire practice clinical team including GPs, practice and community nurses were invited to participate in the review of case notes for patients where the diagnosis was delayed the most. GPs were asked to consider the clinical records and identify specific dates when the patient may have presented with a sign or symptom which heralded the malignancy finally diagnosed. GPs were aware that a longstanding history of cough in a smoker or attacks of diarrhoea in irritable bowel syndrome could make this problematic and were asked to focus only on symptoms which appeared to differ significantly from any chronic symptoms in that patient. It was not possible within available resources to have these dates validated by the patient. The records were subjected to a structured investigation of clinical incidents as described by the Clinical Risk Unit (CRU) on their website.12 The discussion was primarily to identify relevant factors in relation to delayed diagnosis in an individual case. The team were guided to consider the possible contribution of patient, GP, specialist and systems in relation to any delay.
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Results |
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Fifty-six cases were included. This was a small number of cases identified from the computer records in the practice. Other cases may have been missed because of an incorrect or non-malignant diagnosis entered on the practice computer and therefore overlooked in the search for cases. However, the aim was to identify cases for discussion in the subsequent structured investigation rather than all possible cases in the practice. The intervals from presentation to referral, referral to diagnosis and presentation to diagnosis were compared as in Table 1. These data were not normally distributed and it was therefore necessary to carry out a log transformation prior to comparing means in order to compute P-values. These data should be interpreted with caution as they relate to a small number of cases. Patients referred as ‘urgent’ were diagnosed soonest. The type of cancer or the choice to perform a rectal or vaginal examination prior to referral did not make it more or less likely that the diagnosis would be delayed. Patients referred routinely but within 30 days of presenting symptoms suffered a longer delay from referral to diagnosis. The eight cases reviewed in detail by the clinical team are described in Table 2. In some cases, patients were relatively asymptomatic and were referred due to an incidental finding of iron deficiency anaemia or an unexpected lesion on a chest X-ray. There were fewer lung cancer patients available for review than one might anticipate, suggesting that such patients do not survive long after diagnosis and therefore were not available for review in this study. The team's conclusions and recommendations from the review of records and discussion of cases are presented in Tables 3 and 4.
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Discussion |
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We echo the finding that delays in diagnosis sometimes result from cases not being selected for ‘urgent’ referral to a specialist.13 However, in individual cases, the clinical team identified that this arises from failures of communication or reticence on the part of the patient. It has been reported that patients want rapid diagnosis, specialist treatment and good communication.13 The data suggest that patients who are referred as ‘urgent’ are diagnosed soonest. This is consistent with fast track pathways for prioritized cases, with potentially longer waits for ‘routine’ appointments, and might be predicted by complexity theory and Braess's paradox.10 As Papadopoulos noted, increasing resources in one part of the system creates bottlenecks in other parts and reduces overall efficiency. The cancer patients' progress through the system could in some cases be described as being ‘left in limbo’,14 with delays to diagnosis measured in months.
The data suggest the need to take a global view. Interventions in one part of the health care system need to be matched by anticipating the impact on the rest. The data illustrate that even when cases are referred appropriately, delays may result from errors of omission or commission in secondary care no doubt for a host of reasons not considered in any detail herein. As the patient's advocate, the GP may influence the length of the delay by challenging specialist decisions or prolonged delays for routine investigation. However, this would require practitioners to review the progress of cases that were already under specialist care and may prove difficult in practice. Within complexity theory, this could be taken as an example of a resistance to change. Also, the reticence to challenge specialist opinions may have roots in a culture where practitioners on either side of the interface traditionally avoid conflict.15,16 Nonetheless, it has been noted before that patients prefer their GPs to be advocates, not gatekeepers,13 and the responsibility to select ‘urgent’ cases has increased tension within the system.
Some of the GPs involved in documenting records have retired from practice and did not participate in the audit. Also, in no case were the teams recollections validated by patients' accounts. Nonetheless, the methodology adopted allowed wide-ranging issues to be considered in detail by a group of practitioners in a close working relationship with an intimate knowledge of their patients, their practice and experience of working with local hospitals. Often similar themes emerged as relevant to delay in a series of cases, and one could reasonably anticipate that these may be generalizeable in UK practice. We present data illustrating that delays in the diagnosis of cancer need to be tackled at multiple levels and that while primary care has a role in identifying cases for investigation, it cannot be considered as immune to the behaviour of patients or practice in secondary care. All contribute to the problem and all must be part of the solution.
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1 MacDonald L, Freeling P. Bowels: beliefs and behaviour. Fam Pract 1986; 3: 80–84.
2 Mikulin T, Hardcastle JD. Gastric cancer–delay in diagnosis and its causes. Eur J Cancer Clin Oncol 1987; 23: 1683–1690.[CrossRef][Web of Science][Medline]
3 Carter S, Winslet M. Delay in the presentation of colorectal carcinoma: a review of causation. Int J Colorectal Dis 1998; 13: 27–31.[CrossRef][Web of Science][Medline]
4 Wallace DM, Bryan RT, Dunn JA, Begum G, Bathers S. Delay and survival in bladder cancer. Br J Urol Int 2002; 89: 868–878.
5 Martin IG, Young S, Sue-Ling H, Johnson D. Delays in the diagnosis of oesophagogastric cancer: a consecutive case series. Br Med J 1997; 314: 467–470.
6 Mansson J, Bjorkelund C, Hultborn R. Symptom pattern and diagnostic work-up of malignancy at first symptom presentation as related to level of care: a retrospective study from the primary health care centre area of Kungsbacka, Sweden. Neoplasma 1999; 46: 93–99.[Web of Science][Medline]
7 Mansson J and Bengtsson C. Pulmonary cancer from the general practitioner's point of view. Experience from the health centre area of Kungsbacka, Sweden. Scand J Prim Health Care 1994; 12: 39–43.[Medline]
8 Rose PW, Watson E, Yudkin P et al. Referral of patients with a family history of breast/ovarian cancer–GPs' knowledge and expectations. Fam Pract 2001; 18: 487–490.
9 Bak P. How Nature Works: The Science of Self-Organised Criticality. New York: Springer-Verlag; 1996.
10 Papadopoulos M, Hadjitheodossiou M, Chrysostomou C, Hardwidge C, Bell BA. Is the National Health Service at the edge of chaos? J R Soc Med 2001; 94: 613–616.
11 http://www.doh.gov.uk/cancer (accessed October 2002).
12 http://www.patientsafety.ucl.ac.uk (accessed October 2002).
13 Bain NS, Campbell NC, Richie LD, Cassidy J. Striking the right balance in colorectal cancer care–a qualitative study of rural and urban patients. Fam Pract 2002; 19: 369–374.
14 Preston C, Cheater F, Baker R, Hearnshaw H. Left in limbo: patients' views on care across the primary/secondary interface. Qual Health Care 1999; 8: 16–21.[Abstract]
15 Marshall MN. How well do general practitioners and hospital consultants work together? A qualitative study of cooperation and conflict within the medical profession. Br J Gen Pract 1998; 48: 1379–1382.[Web of Science][Medline]
16 Mitchell-Heggs P. Do GPs and hospital specialists really hit it off? Br J Cardiol 1998; 5: 606–608.
17 http://www.G-RAF.org.uk (accessed October 2002).
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