Family Practice Vol. 17, No. 4, 323-328
© Oxford University Press 2000
The general practice perspective on cancer services in Lothian
Lothian Health, 148 Pleasance, Edinburgh EH8 9RS, UK.
Gorman DR, Mackinnon H, Storrie M, Wilson GS and Parker S. The general practice perspective on cancer services in Lothian. Family Practice 2000; 17: 323–328.
Received 17 April 1999; Revised 17 February 2000; Accepted 13 April 2000.
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Abstract |
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Objectives. The aim of the present study was to obtain views from general practices about current and potential improvements to services for patients with suspected lung, large bowel, non-melanoma skin and breast cancer.
Method. A questionnaire study was carried out of 134 general practices within the Lothian Health Board boundary. Information was sought about referral choices, communication, quality of care, liaison between community and hospital, health promotion, treatment outcomes and palliative care. Main outcome measures were determinants of primary care referral behaviour and clinical investigation strategies, and perception of quality in secondary care and health promotion services.
Results. Seventy-nine general practices (59%) returned completed questionnaires. One-fifth of practices maintained a cancer register, and 85% provide patient information about cancer prevention. Initial management was disease dependent. Most cases of suspected lung cancer, about half of suspected colorectal cancer cases and very few cases of suspected breast cancer were investigated in primary care before referral to hospital. Hospital referral depended on knowledge of local services. A minority of practices wanted referral guidelines. It was estimated that 92% of lung and breast cancer cases, 68% of colorectal cancers and 35% of skin cancers are seen within 4 weeks. Breast cancer care was rated more highly than that for other cancers. One-third ranked community nursing support as ‘excellent’ and 10–15% described it as ‘fair’ or ‘poor’; 77% describe palliative care as ‘excellent’ or ‘good’. Fifty-one percent believe that communication with hospital is ‘excellent’ or ‘good’. Practices were sometimes unaware of the hospital's post-diagnosis management plan; communication was often too slow and practices often received ‘poor’ advice about symptom control. Eighty percent thought that hospital follow-up for breast, colorectal and lung cancer should be routine; 20% thought that it was indicated for non-melanomatous skin cancer.
Conclusions. Communication problems between primary and secondary sectors need to be tackled innovatively and the perceived quality variation in services addressed—perhaps by developing local guidelines. Practices would welcome further education about health promotion resources and cancer epidemiology.
Keywords. Cancer services, general practice, Lothian.
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Introduction |
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Britain has both higher incidence and poorer outcomes from cancer care than other European countries.1–3 This has been recognized in many Government publications, most notably the Calman–Hine Report in England and Wales and the Scottish Cancer Co-Ordinating and Advisory Committee reports in Scotland, and improving cancer care is now a national priority for the Health Service.4–6 Reconfiguring cancer services by centralizing expertise in secondary and tertiary centres, and developing the role of primary and community care are seen to be essential in providing optimum access and care of all patients.7–9 Within South East Scotland, Health Boards have formed partnerships involving patients, carers, Trusts, Local Healthcare Cooperatives, Primary Care Teams and palliative care providers to inform the development of regional cancer services.
The hospital perspective has been a strong focus in these developments. There is little published on attitudes and opinions of primary care professionals on cancer care provision. To find out more about the usual practice of GPs in Lothian and their views on the current provision of cancer services, a survey of all practices was carried out.
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Methods |
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Following a pilot study in eight practices, a questionnaire was sent out in May 1997 to each of the 134 general practices in Lothian. It focused on the common cancers of lung, breast, colorectal and non-melanoma skin cancer. Practices were coded and a reminder issued to those who had not replied before the initial deadline. GPs were asked to reply on behalf of the whole practice.
The questionnaire was comprehensive. There were several sections about referral (numbers, open access service, helpfulness of guidelines, determinant of choice of specialist or clinic); care during remission (patients' and doctors' access to hospital services and opinions about clinical review); care during relapse (GP and patient access to hospital and information about advice given by hospital staff to GPs); general care (principally regarding palliative care, community nursing); and training (current awareness of cancer epidemiology and outcomes and health promotion topics).
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Results |
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There was an overall response rate of 59% (79 of 134 practices responding). There was no difference in list size or the mean deprivation category of patients registered with responding and non-responding practices.
Of practices responding, 21% had a register of patients with cancers. Between 46 and 55% of practices did not know how many of their patients had one of the four cancers. However, 44% of practices believed that they had referred between one and five patients with each of the malignancies in the past year.
Initial management and referral
The initial general practice management of suspected cancer depended on cancer site (see Table 1
). It was unlikely that a practice would investigate further, within primary care, a woman with symptoms suggestive of breast cancer, while with lung cancer further investigations by the practice prior to referral would be done in three-quarters of cases and in 45% of those with colorectal cancer symptoms.
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Practices refer by letter in 75% of referrals, with fax and telephone used in 17% and 11% of cases, respectively. It is clear that practices will sometimes use two methods to refer the patient. Several comments noted that urgent cases who were ‘telephoned in’ normally were seen very quickly. There was no mention made of other electronic methods of referral, e.g. through e-mail.
Table 2 shows important factors in choosing where to refer patients, whilst Table 3 shows the out-patient appointment waiting times for referrals for each cancer type. While there are differences, particularly regarding skin and colorectal cancers, practices place high priority on their patients being seen by a specialist in a specialist unit. Distance to the hospital and waiting time, while considered important, are of lesser relevance. Nonetheless, there were 18 comments specifically on waiting times for out-patient appointments. Practices highlighted their wish for regularization of ‘fastrack’ facilities and an increase in the availability of open access investigation and diagnostic services.
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Practices reported that 4% of patients with symptoms suggestive of colorectal cancer wait >8 weeks for initial investigation (Table 3
). Comments reflect dissatisfaction with this situation particularly the current prioritization of gastrointestinal referrals, where practices want quicker investigation of patients with bowel symptoms, particularly rectal bleeding. Units in the same trust can have different methods of prioritizing urgent referral, and this was highlighted as being illogical and confusing. Also, hospital units appear to expect different levels of pre-hospital work-up by the practice, which was mentioned as a source of misunderstanding.
Communication
Practices were asked what information they need from the specialist about the hospital review of their patients. They rated most highly the diagnosis, treatment, follow-up requirements and, importantly, what the patient had been told. Less important was information about investigations and procedures performed, palliative care, drug side effects and psychological support, with details of entry into any clinical trial being of little interest. Consensus about what information was required was matched by a desire for the information to be available within 48 hours of the clinic appointment (62% of practices). This expectation is rarely fulfilled. Indeed, practices estimate that in 25% of lung or breast cancer and 46% of colorectal cases, there is no information available from the hospital 1 week after their patients' investigations.
Seventy-five percent of practices ‘occasionally’ discuss an individual's care with hospital staff, while 15% ‘usually’ do so. They believe that communication between themselves and the hospital is ‘excellent’ in 6% of instances, ‘good’ in 45%, ‘fair’ in 36% of cases and ‘poor’ in 13%.
Referral guidelines
Practices were asked if guidelines on referral of suspected cancer would be valuable. Responders were split evenly between yes and no, with 20% not having any particular view. A total of 49% of practices felt that there should be referral protocols for colorectal cancer (37% and 32% for lung and breast, respectively).
Other views about guidelines could be summarized as:
- GPs being experienced enough to decide when to refer to secondary care;
- guidelines being generally too lengthy;
- they contain too much information for practices to use;
- they are too numerous; and
- can be confusing because various available ‘guidelines’ conflict on important points.
Follow-up and direct access
Some 80% of practices believe that hospital follow-up for malignant cancer should be routine, 20% think it should be dependent upon clinical indication. There was a marked difference regarding non-melanoma skin cancer, where 40% thought that hospital follow-up should be routine.
Practices can be unaware of the arrangements made for hospital follow-up, secondary referral to another consultant and the post-diagnosis facilities open to their patients. Regarding direct access to hospital services during follow-up, i.e. bypassing the practice, 20–30% of practices did not know whether this happened and 30–54% believed it did not. Some 44% of responders believed that patients had direct access to the breast cancer service as compared with 15% for lung cancer and 11% for colorectal.
Symptom management and palliative care
As Table 4 shows, practices have some concerns about the advice they get from hospital staff about managing symptoms. The management of anorexia, constipation and dyspnoea are of particular concern. Qualitative comments indicate that this shortcoming hinders staff in managing patients within the community and can contribute to suboptimal care.
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A total of 86% of practices thought that palliative care in the community was ‘excellent’ or ‘good’. However, a proportion (16%) did not know whether hospital-based staff were also providing care in the community.
Quality
The quality of hospital cancer care generally is rated as ‘excellent’ or ‘good’ by practices (see Table 5). They credit the breast cancer services in Lothian as providing better care to patients than services for the other three cancers. This positive opinion of hospital-based care is not mirrored for community care. Around one-third of practices think that community nursing support for lung, breast and colorectal cancer patients could be described as ‘excellent’, with a consistent 10–15% describing this as ‘fair’ or ‘poor’.
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Epidemiology and health promotion
Only 20% of practices said that they knew what the Scottish survival rates for these cancers are, with almost 75% of practices wishing to know more about cancer epidemiology.
The majority of practices provide information about cancer prevention. This is generally in literature form, with 85% having posters in public areas and about three-quarters routinely providing ‘pick-up leaflets’. About one-quarter of Lothian practices were unaware of the Health Promotion Department resources, and two-thirds of practices used them only occasionally.
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Discussion |
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This survey was carried out to ascertain how primary care plays its part in the cancer care continuum in Lothian and the pivotal role of primary and community care in cancer care as recognized by GPs. The importance of the issue is reflected in the care that practices took in completing the questionnaire and the respectable 58% response rate. Practices clearly found some questions difficult to answer possibly because of the rarity of cancer patients, especially new presentations, in individual caseloads. Even the commonest cancers will only present de novo once or maybe twice a year to individual GPs, if at all.10 Practices did differentiate between the three malignant and the benign skin cancer in all their responses. This reflected their understanding of the epidemiology and the biology of the tumours and gave face validity to the findings.
The varying extent of pre-referral investigative work-up done in primary care for the different cancer types was noteworthy. This could be due to a number of factors such as:
- (i) the specificity of presenting symptoms;
- (ii) availability of and practice access to investigative services locally; and
- (iii) the practice's confidence in their diagnostic skills.
- (ii) availability of and practice access to investigative services locally; and
While Lothian's geography means that expert centres are readily accessible to the entire population and patients' travelling to hospital rarely becomes an issue, some points did emerge about referral practice. In line with current evidence, the perceived expertise of the referral centre or clinician is the main factor considered by practices in determining where they send patients.11,12 Where services are centralized in the manner of breast cancer in Lothian, it is the centre's expertise that is cited, and where centralization is not a feature of the service, as in lung and colorectal cancers, an individual expert is identified and patients referred to the consultant.
It seems possible that the practice's perceptions of the effectiveness of treatment options (e.g. lung versus breast) influence the priority/urgency of the referral. Practices will understand that lung cancer pursues a rapid course and has a poor outcome. It is interesting to consider why practices investigate this cancer in primary care to a greater extent than other cancers rather than initiating immediate referral (i.e. performing a chest X-ray when according to the SIGN guidelines a negative chest X-ray with continued symptoms should result in referral).13 Forty percent of Lothian patients wait >2 weeks for review by a specialist (the SIGN recommended maximum wait). This results in delay for patients who may have rapidly progressive disease, with possible loss of therapeutic options which are available for some tumour subtypes. Perhaps recent advances and increased treatment options may be unfamiliar to practices: this could be addressed by education and publicity.
The effect on referral patterns of perceived waiting lists for specialist appointment or open access investigation is an important area that merits further investigation.14 Long waits can be experienced locally for upper and lower gastrointestinal investigations, with non-urgent procedures appearing to delay investigation for possible malignancy.
The scope for improvement in communication between primary and secondary care was a recurrent theme, with the need for the transfer of accurate and timely information continually stressed. No practices cited the use of e-mail for making referrals. Prompt application of existing technology including the NHS Net could quickly make a large impact in the standards of communication and, by extension, the quality of care. The fact that in Lothian practices believe that communication between themselves and the hospital is ‘excellent’ in only 6% of instances is something that should be addressed rapidly.
The contracting system tended to concentrate on standards for timeliness of discharge documentation, arguably at the expense of more comprehensive communications to both practices and patients. Responses indicate that letters are still often slow to reach practices and that faster throughput of cases may be exacerbating the situation. This can result in patients recently discharged or following out-patient investigations being seen by a GP who is unprepared, with no information about diagnosis or what the patient had been told by hospital staff. The expanding of ‘discharge management’ to this class of patient could pay dividends in improved communication. This might be best based on e-mail and faxes rather than telephones, which were mentioned here as an inadequate form of communication, doctors being unable or unwilling to be available for telephone calls at set times, or to keep mobile phones or pagers working and on their person. Several practices noted that they had established excellent relationships with particular units which they felt benefited their patients—inviting hospital colleagues to present at practice clinical meetings was useful and might be extended, and ‘open days’ at cancer units were proposed as a way of ‘getting to know’ colleagues.
The relevance of guidelines in cancer care was considered in some depth. The usual range of concerns were raised by respondents, with the format, complexity, length and number of guidelines as factors that can dissuade practices from incorporating them into clinical practice. However, 49% of practices felt that there should be referral protocols for colorectal cancer (as against 37% and 32% for lung and breast, respectively). The marked variation in how practices refer patients with suspected lung and colorectal cancer may reflect uncertainty as to what is the optimum management—reinforcing the need for local implementation of the SIGN guidelines. Responses may indicate that guidelines are more useful across the primary–secondary care interface for rare but important conditions where there is no local consensus as to how and when to refer. This is reflected in some illogical referral patterns.
Guidelines should address the evidence for post-diagnosis follow-up of patients. Some 89% of practices believe that hospital follow-up for cancer should be routine, despite evidence that suggests that this may not be indicated, e.g. in the care of women with breast cancer.11,15 Follow-up should be patient centred and therefore tailored to the needs of the patient, with particular regard to the patient's psychological as well as physical needs—patients must not be regarded as a diagnosis with a stage attached.
Improved education of doctors, primary care teams and the public must be a cornerstone of efforts to improve cancer outcomes. Innovative educational initiatives for GPs and their teams about cancer, incorporating updates on epidemiology, latest treatment options and outcomes, are in existence locally and are being refined regularly (Lothian Health Health Promotion Department, personal communication). These must be flexible to accommodate the training needs of doctors—by organizing general ‘cancer courses’,16 updates on individual cancers or concentrating on ‘new’ topics such as cancer genetics.
It is known that patients often delay presentation of symptoms to doctors and also that there can be considerable delay in investigation and treatment of cancer after presentation to the GP.17,18 This presents a challenge to health promotion agencies, something which the Health Education Board for Scotland (HEBS) has prioritized.19 While this high-level media-based awareness raising is implemented appropriately at the national level, practices are unclear about whether HEBS or the Health Board Health Promotion Department should be approached for materials, training, etc.—something that the agencies involved can address readily.
Responders were clearly not utilizing health promotion resources to best advantage and thus are missing opportunities to improve health in their communities. As exemplified by recent government White Papers,6,20 there is increasing knowledge and public awareness of ‘lifestyle’ issues and health. Knowing that modifications to diet, exercise and environment can affect cancer risk, we should optimize the input of primary care teams. Education of primary care teams should include updates on health promotion approaches.
This study emphasizes that there are areas where the care of patients with cancer can be improved, but current services have many good points on which to build future plans. Some important aspects of cancer care are not examined critically in this study, and practices may want to examine their own standards and make improvements as necessary. For example, practices could audit their communication to hospital, looking at the quality and timeliness of their referral letters and follow-up communications, and hospital doctors may benefit from knowledge of how their patients are faring in the community. The ongoing developments in the NHS, particularly those involving Primary Care Groups/Local Healthcare Cooperatives, and the rationalization of cancer care can provide the framework upon which to implement many of the recommendations of this report. This should ensure that the current variable standards of care experienced by cancer patients become less of a feature of NHS care.
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