Family Practice Vol. 17, No. 6, 475-479
© Oxford University Press 2000
Treating patients with colorectal cancer in rural and urban areas: a qualitative study of the patients' perspective
Department of General Practice and Primary Care, Foresterhill Health Centre, Westburn Road, Aberdeen AB25 2AY, UK.
Correspondence to Dr NC Campbell.
Bain NSC, Campbell NC. Treating patients with colorectal cancer in rural and urban areas: a qualitative study of the patients' perspective. Family Practice 2000; 17: 475–479.
Received 10 January 2000; Revised 11 April 2000; Accepted 17 July 2000.
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Abstract |
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Objectives. The aim of the present study was to explore the perspectives of patients receiving treatment for colorectal cancer and compare priorities and attitudes in rural and urban areas.
Method. A qualitative study was carried out involving four focus groups in the Aberdeen and Northern Centre for Haematology, Oncology and Radiotherapy. The sample comprised 22 patients at various stages of treatment for colorectal cancer and 10 of their relatives from different locations of Northeast Scotland and Shetland. The main themes generated by participants were identified, and similarities and differences between urban and rural patients were noted within these themes.
Results. Components of care that were important to rural and urban patients were speed of referral to specialists for treatment and issues of communication including test results and delivery of bad news. Tensions were perceived at the interface of primary and secondary care and these were blamed for delays in referral and communication breakdowns. For some, the referral process comprised a series of barriers to be overcome, and there were additional hurdles for remote patients referred initially to local (non-specialist) hospitals. Rural patients appeared to be less demanding than their urban counterparts when evaluating their care, and this was extended to the acceptance of some clear transport problems.
Conclusions. For patients, the most important components of cancer care were similar, whether rural or urban residents. The main differences for rural patients were lower expectations of care and more hurdles before reaching specialist care. These differences might explain the trend to more advanced disease at diagnosis in rural patients if they lead to significant delays. GPs have major influences on this and all the patients' priorities.
Keywords. Colorectal cancer, focus groups, primary and secondary care interface, qualitative, rural and urban.
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Introduction |
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In response to the recognized benefits from specialist cancer care, the Expert Advisory Group on Cancer in England and the Scottish Cancer Co-ordinating and Advisory Committee laid out a framework for the provision of cancer services.1,2 Two general principles were that patients should have "access to a uniformly high quality of care wherever they may live" and that "the development of cancer services should be patient centred." Colorectal cancer is the third most common cancer and second most common cause of cancer-related death in Scotland.3 It is equally common in men and women, and management includes a wide range of treatments (e.g. surgery, chemotherapy, radiotherapy). Clear evidence-based guidance on optimal care in colorectal cancer were set out in 1997 by the Scottish Intercollegiate Guidelines Network and Scottish Cancer Therapy Network.4
Patients from rural areas (who comprise 20% of the UK population5) can have particular problems accessing specialist services. Studies from other countries show that cancer often is diagnosed later, conferring a poorer prognosis in rural areas compared with urban.6,7 In France, rural patients with colorectal cancer were less likely to be referred to specialist centres or receive adjuvant treatments.6 For several common cancers in Scotland, including colorectal cancer, distance from a cancer centre was associated with less chance of diagnosis before death.8 The reasons for these differences are unclear, although, with respect to general health care, it has been suggested that different attitudes among rural people and problems with long distances may be important.9
In attempting to provide high quality, specialist treatment for colorectal cancer to rural as well as urban patients, the views and experiences of patients and their relatives should be taken into consideration and differences between urban and rural patients identified. The aim of this study was to explore the perspectives of patients receiving treatment for colorectal cancer and to compare attitudes and priorities in rural and urban areas.
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Methods |
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Rural, remote and urban participants were recruited from patients attending an out-patient clinic for colorectal cancer patients and from chemotherapy in-patients. Remoteness was defined as greater than 1 hour drive from the main cancer centre, rurality as within 1 hour drive of the cancer centre and outside the city boundary, and urban as within the city boundary.10 The sampling frame recognized three main treatment pathways: surgery alone; surgery and chemotherapy; and radiotherapy and surgery. Patients were sampled at stages along these pathways from soon after surgery to follow-up after chemotherapy, ensuring that a wide range of experiences were included.11 Those undergoing palliative treatment with chemotherapy, radiotherapy or surgery were included, but terminally ill patients were not.
Four focus groups were run in the clinic library. A total of 32 participants attended (22 patients and 10 spouses). Of the 22 patients, eight were 70 years or over (three urban, five rural), six were in their 60s (three urban, three rural) and eight were under 60 years (five urban, three rural).
The sessions lasted 90 minutes each. Respondents (and relatives) were invited to write down, anonymously, up to three aspects of their care which were good and three areas which could be improved. The researchers then collated the comments on a flip chart for group discussion.12 This ensured that the dialogue was confined to issues important to participants and not directed by the researchers' agenda.
The group discussions were audiotaped (with participants' permission) and transcribed and analysed with the aid of NUD*IST—a software package for text analysis. Recurrent themes were identified inductively and different viewpoints were noted. Sections of transcripts were then grouped by theme and re-read, comparing comments from urban and rural participants within each theme to identify similarities and differences.13 The first author performed the main analysis. Two methods were used to ensure reliability in the analysis. First, at the end of each group discussion, important themes that had emerged were noted on a flip chart and agreed with the participants—a form of ‘respondent validation’.14 Secondly, transcripts were re-read by the second author to verify the analysis independently.
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Results |
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Five broad themes emerged repeatedly during the focus group discussions. We have labelled them procrastination, communication, expectation, collaboration and transportation.
Procrastination
The notion of delay in presentation and speed (or otherwise) of subsequent referral and treatment was voiced by several participants. Patients described delaying self-presentation for three apparent reasons: fear of cancer diagnosis; the embarrassing nature of the condition; and the apparent triviality of symptoms. Delays and reasons were similar for urban and rural patients both stating they "just didn’t want to know" or would not "bother the doctor with that sort of symptoms."
After presentation, care in general practice often was evaluated in terms of how quickly they were referred to the specialist:
"I got first class service from my GP ... They have a scanner in (patient's general practice) and I was put in here (hospital) just like that." (male/70s/rural)
"It was a GDOC (emergency on-call co-operative) who put me in (hospital), and yet I was going back and fore to my own doctor from April to August ... We went to the solicitor to see if we could sue but he said, ‘They are bigger than you,’ so we just left it." (female/70s/urban)
Much of this depended on the role definition they had of their GP. Some expecting "the very best" from their GP as the patient advocate, while others viewed him as "the one who controls your entry into the system"—a potential barrier to overcome. They thought that referral from general practice could be hindered by the labelling of symptoms as "a waste of the consultants' time." One respondent remarked:
"I was lucky, I didn’t have to go to my GP because I collapsed in church." (male/60s/urban)
Delays were also perceived in secondary care, and, at this level, some participants from more remote locations voiced concerns that they had to cope with another hurdle—the local hospital:
"They should not set themselves up as specialists (local hospital). There is a big gap between the time you are in the local hospital to the time you are in the main hospital and (raises his voice) that is your life!" (male/70s/remote)
Communication
Three main concerns of both rural and urban participants were delivery of bad news, access to test results and having information withheld. Communication was acknowledged as being "difficult ground" for doctors. Direct communication or "not pussy footing around" was appreciated by some, but others spoke of being "left with no hope" and "insensitivity":
"It was the way he said (to students) ‘You know this lady could have died last week.’ I said (raises her voice) ‘What!’ ... He was just sitting there as if you had just had a spot cleared up." (female/50s/urban)
A great deal of heightened anxiety was mentioned around the reporting of test results.
"I was sent for a liver scan and I never got the result. That was a bad thing ... The GP said he would find out for me, but I never heard ... It was when I was back at the clinic I got the result then, 6 weeks later." (male/60s/urban)
Restricted or conflicting information undermined confidence for some patients, who remarked they "were kept in the dark". The possibility of health professionals having a hidden agenda became a constant concern for these participants.
Collaboration
Tensions were perceived at the interface between primary and secondary care. Well co-ordinated continuity of care was appreciated, but there was a feeling among some participants that GPs and hospital doctors were, on the whole, not working together:
"Is there maybe problems that the doctors are frightened to refer people to the hospitals—you know, they are the small fry and the hospital are the big fry? I was being treated for haemorrhoids for a long time ... Had he been saying to himself, ‘Well, I’ll deal with this sort of thing and not bother the hospital?’" (male/50s/rural)
"I find my doctor is feart (afraid) o’ the clout of the hospital coming back on him. He hedges round the question and he waits for the hospital to give him the answer. He won’t actually come out and say anything." (male/40s/urban)
GPs appeared at times to be ill-informed of ongoing treatments and test results.
Expectation
Different expectations were apparent between city dwellers and those from rural communities, as the following dialogue illustrates:
"How can a doctor in his surgery carry out an examination and say there is not a problem and later when she is referred for a colonoscopy there is a problem. He should have been referring people for colonoscopies earlier." (husband/50s/urban)
"I can understand your point of view but at the same time I think we expect too much from the GP." (husband/70s/rural)
"No we don’t. We should expect the very best from our GPs and if the GP has any doubts (raises her voice) he should send you for tests." (female/ 50s/urban)
"As far as we were concerned we were perfectly satisfied with our GP’s performance—he said ‘There is nothing here tells me that that’s (tumour) there.’" (husband/70s/rural)
There were several similar examples of this rural–urban dichotomy which remained consistent over gender and age differences. For example, a 4 month delay in referral by a city GP was perceived as a default severe enough to qualify for litigation (female/70s) while a delayed referral to specialist care of 1–2 years was thought "perhaps" to be slow by a younger (male/50s) remote participant. The difference was not an absolute one but more in terms of degree of acceptance of delays.
Transportation
There were clear examples of difficulties for remote and rural patients travelling for treatment:
"You are driving in there and it is on your mind and it is just in—zap—out to the car park again ... I had to find out where every toilet was on the way home—I couldn’t move unless there was a toilet near hand. You would explain this to them and they would say ‘Oh aye, well, see you in the morning again.’" (male/50s/rural)
"... our appointment is always between 1 and 2 o'clock but we don’t get home until 6.30pm ... The last time was bad because we were in a snow drift for 2 hours. After the chemo I was very distressed, I needed the toilet and I didn’t know what to do. It took three snow ploughs to get us out—what a carry on." (female/70s/rural)
Comments on the problems of distance rarely formed the main body of discussions however, and, while raised as important in terms of how individuals coped (with the side effects of treatment, for example), appeared to be largely accepted as an inevitable limitation of rural life in general.
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Discussion |
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TopAbstractIntroductionMethodsResultsDiscussionReferences |
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Our main findings were that rural and urban patients shared concerns about the speed of referral for treatment and their progress through the system, communication of bad news and test results, and tensions at the interface of primary and secondary care. Rural patients appeared to have less demanding expectations of their care and largely appeared to accept some clear travel problems.
Strengths and weaknesses
The main strengths of the study lay in the dialogue between rural and urban patients in the focus groups.15 The participants generated and explored their own important issues. The dialogue highlighted their priorities and attitudes and demonstrated their framework of understanding about, for example, the referral process and the conflicting roles of primary care and health care interfaces. It also allowed areas of agreement and divergence between rural and urban participants to be identified. The main limitations of focus groups are that the views of quieter participants can be lost and information on personal matters will not necessarily be shared16 (e.g. colostomies were not mentioned). As participants were recruited from a specialist unit, the views of patients who did not attend specialist oncology may have been missed, although we ensured that those treated by surgery alone were represented. Finally, the group discussions were conducted in a library close to the oncology out-patients department and this may have influenced comments about the oncology unit.17
Relationship to previous studies
Some of the main themes we identified are in line with similar studies in different contexts. Patients with terminal disease have highlighted the importance of communication in terms of how they were given information, waiting for test results and knowing where and when results would be available.18 Slow and incomplete communication between GPs, specialists and patients has been reported for breast cancer19 and non-cancer illnesses,20 and the desirability of good communication mentioned frequently.21 We have confirmed the importance of good communication during the diagnosis and active treatment of colorectal cancer. Poor communication remains a concern despite clinical guidelines that sought to tackle it.18
Quantitative comparisons of rural and urban patients with colorectal cancer have consistently shown differences at diagnosis. In France and the USA, rural patients with colorectal cancer have been found to present with more advanced stage disease6,7 and, in Scotland, they have less chance of diagnosis before death.8 Our findings suggest possible explanations. First, rural patients may experience more delays between referral and treatment if initially directed to a local, non-specialist hospital. How much these delays would affect stage and prognosis is not, however, clear. Some studies have even found a survival advantage from delays in diagnosis, although this association probably reflects the longer time taken to diagnose early stage disease.22 It remains unproven, however, that delays of a few weeks or even months would have a major effect on staging and prognosis.4
Differences in patient expectations, however, could be associated with much longer delays. We found examples of delays of up to 2 years that could quite plausibly affect staging and prognosis. Participants who presented with advanced stage disease had often perceived their symptoms to be trivial or had been accepting of a benign diagnosis over a long period of time. Rural patients who tend to have lower expectations when evaluating their care may delay presentation and be less demanding of referral to specialist centres. This explanation is, of course, a hypothesis which should be tested in future research by quantifying and comparing delays between presentation and treatment for rural and urban patients.
Relevance for general practice
A common thread through the main themes identified by patients as important in cancer care was general practice. For some patients, it was an obstacle to be overcome on their way up a perceived medical hierarchy; for others, the GP was a proactive guide and advocate. Primary care was identified by the Expert Advisory Group as ‘pivotal’ in cancer care, and our findings reinforce this.1 In rural communities, the role of general practice is particularly important.5 Good communication, well co-ordinated care, rapid referral and smooth progress through the system are needed to counterbalance inequities arising from lower expectation, more complicated routes to specialist care and problems of distance.
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Acknowledgments |
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We thank David Millar, Lewis Ritchie, Jim Cassidy and Leslie Walker for help with the proposal, Fareeda Ahmed for help with recruitment, and Isobel McPherson and Sheena Donald for help with the focus groups. A special thank you to the group participants for sharing their experiences and for their openness in the group discussions. The Health Services Research Committee at the Scottish Office funded the study. NCC is funded by a Cancer Research Campaign Primary Care Oncology Fellowship.
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1 Expert Advisory Group on Cancer to the Chief Medical Officers of England and Wales. A Policy Framework for Commissioning Cancer Services. London: Department of Health, 1995.
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