Striking the right balance in colorectal cancer care ... - Oxford Journals

Family Practice © Oxford University Press 2002

Vol. 19, No. 4 Printed in Great Britain

Striking the right balance in colorectal cancer care—a qualitative study of rural and urban patients Norma SC Bain, Neil C Campbell, Lewis D Ritchie and Jim Cassidya Bain NSC, Campbell NC, Ritchie LD and Cassidy J. Striking the right balance in colorectal cancer care—a qualitative study of rural and urban patients. Family Practice 2002; 19: 369–374. Background. Colorectal cancer is the second most common cause of cancer-related death in Scotland. For patients, the journey from diagnosis through treatment is complex and there are inequalities in survival rates. Objectives. The aim of the present study was to explore how patients with colorectal cancer perceive their care. Methods. This was a qualitative study involving 95 patients and relatives of patients with colorectal cancer in the North, Northeast and Northern Isles, Scotland. Focus groups (32 participants) were conducted in hospital, and interviews (63 participants) in patients’ own homes in order to explore their experiences of health services for cancer—what was good, what was bad and what was needed. Analysis was inductive, with exploration of similar and divergent perspectives within themes. Results. Patients wanted rapid diagnosis, specialist treatment and good communication, but their experiences of and perspectives on these areas were often divergent. Delays in diagnosis could stem from late presentation by patients, but also from early presentation when the cancer could go undetected. GP continuity was desirable, but sometimes implicated in delays. Patients preferred their GPs to be advocates, not gatekeepers. The context, however, was one where some patients pursued their care tenaciously while others did not. For some, speed of progress through the system was everything, but others found this could be impersonal. Outlying patients had to balance transport difficulties with the benefits of distant specialist treatment. Some patients wanted full information to be provided directly, but others could not cope with this. Conclusions. From patients’ perspectives, ideal cancer care cannot be achieved in a uniform way. For some of the key goals of cancer treatment to be met, including rapid access to specialist treatment for all and good communication of bad news and test results, a balance must be struck which tailors care to individuals. Keywords. Colorectal cancer, health services, patients’ perspective, qualitative research.

higher in the UK than in most other Western countries.2 Secondly, chances of survival are strongly related to stage at diagnosis—5-year survival varies from 83% for patients with disease limited to the bowel wall to 3% for those with disseminated disease. Early diagnosis is, however, difficult to achieve.3–5 Thirdly, treatment can be complex and involve several specialities, including surgery, radiotherapy and chemotherapy, with their attendant sequelae and side effects.4 Finally, in Scotland, as in other countries, patients’ chances of survival vary depending upon where they live—socio-economically deprived and outlying patients have poorer survival.6–8 Patients with cancer can experience substantial financial, social and emotional difficulties.9 In an attempt to address the concerns of patients and achieve high

Introduction Colorectal cancer is the third most common cancer in Scotland and the second most common cause of cancerrelated death.1 For patients, there are several important concerns. First, the mortality rate for colorectal cancer is Received 6 September 2001; Revised 17 December 2001; Accepted 11 March 2002. Department of General Practice and Primary Care, Foresterhill Health Centre and aDepartment of Medicine and Therapeutics, Aberdeen University Medical School, Foresterhill, Aberdeen, UK. Correspondence to Dr NC Campbell, Department of General Practice and Primary Care, Foresterhill Health Centre, Westburn Road, Aberdeen AB25 2AY, UK; E-mail: [email protected]

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quality cancer care for all patients, wherever they live, several targets have been promoted in the Calman–Hine report and the cancer plans in England and Scotland.10–12 These reports emphasize that: patients should be encouraged to present early; diagnosis should be prompt; progress through the system should be rapid (,1 or 2 months between referral and treatment); care should be conducted by specialists; and communication should be open and complete. One principle behind the recent restructuring of cancer services was that care should be patient centred,10,12 but there is insufficient evidence about patients’ views on and experiences of colorectal cancer care to know whether the NHS Cancer Plan represents those views. This study set out to explore how patients with colorectal cancer perceived their care. A second objective was to compare the views and experiences of outlying patients with those of their urban counterparts.

homes. Patients and relatives were interviewed separately, if possible, using a topic schedule devised from the focus groups. We stopped recruiting new participants for interview when our data appeared to have reached saturation, with no new themes or information within themes emerging. Interviews were audio-taped with participants’ permission; two participants declined so data were recorded in note form during these interviews. Interviews were transcribed and analysed with the aid of NUD*IST, a software package for text analysis. Recurrent themes identified in the focus groups were explored further and corroborated in the interviews, triangulating the public and private patient agendas.15 Additional emerging themes were identified inductively from the interviews, and divergent perspectives between rural and urban participants were noted.16 The first author conducted the majority of interviews and most of the analysis. Five interviews were conducted and nine interviews analysed by the second author to ensure the findings were reliable.

Methods Using purposive sampling,13 95 participants from the North and Northeast of Scotland were recruited from patients and relatives attending oncology and surgical out-patient clinics for colorectal cancer and from chemotherapy out-patients and in-patients. Patients and relatives were sampled at stages along the three main treatment pathways: surgery alone; surgery and chemotherapy; and radiotherapy and surgery. Terminally ill patients were excluded. Participants who lived in Aberdeen or Inverness (which have cancer centres) were classified as urban, the rest as rural. Patients gave informed consent to participate in the study, which was approved by the Grampian and Highland Research Ethics Committees. First, four focus groups with 22 patients and 10 relatives were conducted; these have been described previously.14 Then, in-depth interviews with 39 patients and 24 relatives lasting 1–2 hours were conducted in the participants’

BOX 1

Results Five main themes, which we have reported previously, dominated the focus group discussions (Box 1).14 As the study progressed, however, further exploration within and across these themes revealed that divergent experiences were often reported and opposing opinions expressed. In many areas, it became clear that (i) patients could hold opposing views on the nature of ideal care; and (ii) patients’ attitudes and behaviours could impact considerably on their care, for better or worse. The recurrent theme that emerged was the need for balance. Initial presentation—too late or too early Delays in diagnosis and treatment were a major concern for patients, and many reported themselves delaying before presenting to a doctor. Late presenters tended

Five main themes from the focus groups

Procrastination Speed of or delays in presentation and onward referral for diagnosis and specialist treatment. Communication Delivery of bad news and rapid access to test results. Expectation Rural patients appeared to be less demanding than their urban counterparts when evaluating their care. Collaboration Primary and secondary care were perceived as not always working together or communicating. Transportation Some clear transport problems for rural patients were largely accepted as inevitable.

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to deny, redefine or defer presentation until symptoms became unmanageable. They didn’t want to “call the doctor for nothing”. Although reported by both urban and rural patients, delays appeared to be more common among the latter—“we look after ourselves here”.

“No, you had to wait a wee while. It was one of the locum doctors that referred you and he said you should have been referred long ago.” (No. 88/wife/ 70s/rural)

“I feel I have had this for about two years but, you know how it is, you don’t like to bother the doctors.” (Participant No. 39/female/60s/rural)

GP: advocate or gatekeeper For some patients, the GP was an advocate and they spoke highly of his representation on their behalf. Others viewed the GP as a “barrier” to overcome and a hurdle to be negotiated, or “the one who controls your entry into the system”.

“On the Sunday, I was beginning to have a bit of a belly by then. No, no dinna (don’t) get the doctor the day—I will be all right by morning if I could get even a fart.” (No. 50/male with symptoms for 6 months and imminent obstruction/60s/rural) “I should have been to the doctor a damned site earlier . . . of course, when you dinnae ken fits (don’t know what’s) happening, you don’t go.” (No. 42/male/60s/rural) Conversely, several patients reported early presentation which may, in retrospect, have contributed to, rather than shortened, overall delay. If the cancer was not detectable (or detected) on the initial consultation, and a benign diagnosis was made, the problem was often shelved by patient or doctor. Negative investigations were particularly reassuring. “He (GP) gave me an examination and said ‘there was nothing there’, so you go home and live with the problem.” (No. 20/female/50s/urban) “He (surgeon) did a colonoscopy . . . He was relieved because he didn’t find anything—so I did nothing for about two years and the blood wasn’t getting any worse on the toilet paper.” (No. 48/male/ 50s/rural) GP—continuity or second opinion For some patients, a lack of continuity, often because their preferred GP was difficult to see, contributed to delay. This problem was more common in urban and large rural practices. “I had been to see the GP before about my tendency to bleed. It was one of those GPs if you go down and ask to see him you can see him in 10 minutes time he’s so popular! . . . Separately I went to see another GP junior to the practice . . . I don’t know why I did that . . . then I went to see (my own GP) who you can take a week or a week and a half to see because he is such a popular doctor . . . It took about 10 days to see him.” (No. 48/male/50s/rural) For others, however, a second opinion was the factor that precipitated referral. This was more common for patients in small rural practices, where there could be little or no choice of GP. One wife corrected her husband when he spoke of being referred “immediately”.

“When they first discovered I had bowel cancer that was dealt with very quickly and very efficiently through the GP here. He got me straight into (main cancer centre) and operated on.” (No. 83/female/ 50s/rural) “I was just getting treatment for piles, still more treatment for piles far (where) he (GP) should have been, I think, I think he should have been quicker as far as that was concerned.” (No. 42/male/60s/rural) “He (GP) should refer you on more or less straight away . . . He or she could be a barrier but you would like to think they are on your side.” (No. 87/ husband/50s/rural) Clearly patients were happier with an advocate than a gatekeeper. The context of this was, however, one of substantial differences in patient behaviours. Some did everything they could to speed their progress through the system. These were usually urban residents, who were experienced at “fighting” to the front of the queue like “an ant in an ant hill” and were intolerant of any delays; “Because my wife agitated and agitated I got in (main cancer centre) a month earlier.” (No. 21/male/ 60s/urban) “I demanded an explanation. Its just nae good enough.” (No. 45/female/40s/urban) Others, including most rural patients, waited for their GPs to act for them. Prior to diagnosis, some were keen to avoid onward referral to a distant hospital for investigation. If they experienced delays, they were more accepting: “My own GP, I was preventing him from doing as much as he could because I was digging my heels in taking these tablets and not wanting to go to (cancer centre), you see. I mean he knew that I should be in (cancer centre) but I suppose he couldnae—he couldnae push me.” (No. 34/female/ 60s/ rural) “I was referred a wee bit later than I would have liked.” (2 years between onset of symptoms and referral; No. 74/female/40s/rural)

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Progress through the system—efficient or impersonal Once they were in the system, all patients were unhappy with long delays, but there were differences in the ways they liked the system to operate. Once again, urban patients tended to like things to be “quick” while some rural patients found that this could be impersonal and mechanical. For some, efficiency was everything. Others used the same imagery to convey completely different preferences. “From being diagnosed I was put on a conveyor belt. Everything was quick—I was pleased about that.” (No. 84/male/50s/urban) “Some of the doctors were more like plumbers . . . It was a bit conveyor belty.” (No. 58/husband/60s/ rural) Treatment: specialist or local Some outlying patients preferred to travel to specialist cancer centres for all their care. Others, who tended to be older, preferred all their treatment locally. Patients’ views on this were a trade-off between some clear transport problems and the perception of better treatment at specialist centres. Most patients accepted that some degree of travelling was an inevitable part of rural life— “you just have to put up with it”. “He . . . referred me right away to the local surgeon but I said I preferred to go to (cancer centre) because my mother had similar problems and she was operated on in (local hospital) and the outcome wasn’t very good and she ended up in (cancer centre) . . . I just didn’t want to go through what my mother went through—they just werna up to it.” (No. 74/ female/40s/rural) “I often thought that, if they did the chemotherapy in (local community hospital), even three weeks out of four you know. To me, that would have been better. That bus (ambulance transport) was horrendous, it was terrible . . . I was so sick.” (No. 41/female/60s/ rural) Information: the whole truth or not The receipt of bad news and test results was very important for patients. They wanted information quickly (with good communication between primary and secondary care: “my GP hasn’t got a clue what’s happening”), they wanted to be told “in the privacy of an office and not the publicity of the ward” and they appreciated time being taken, particularly when news was bad (“he just gave you the impression that if you wanted him to sit with you for as long as you needed him”). Beyond this, however, there were differences in what and how patients liked to be told. For some, the complete truth was most important, but others could not cope with too much detail. For many, the need to be left with hope was more important than complete honesty.

“They don’t mince their words—they explain everything in detail. Oh aye, they are good doctors—I would rather be told the truth than lied to. Especially with this kind of thing—I’d rather—it hurts you but it is worth it to know the truth.” (No. 82/female/60s/ rural) “I wouldna want to know that I had 18 months to live, I couldna handle that. When your number is up, your number is up—we are all going to go I know that but I wouldna want to know.” (No. 51/female/ 30s/urban) “He’s (first consultant) told me it is a terminal condition—(second consultant) gave me what I think now was a psychological boost when he said ‘Don’t talk about it being terminal’. So that gave me hope that I didn’t have when I was finished with (first consultant). And ever since then I have been behaving and thinking as though it is not terminal although I’m not sure I actually believe it but I’ve been pursuing the behaviour that it is not terminal or it is no more terminal than life in general.” (No. 48/male/50s/rural). Communication—to the point or too pointed Some patients preferred to receive information as directly as possible. They were unhappy about the use of euphemisms such as “suspicious cells”, “rogue cells” or “a growth”. Others found direct communication difficult to cope with. No one style of communicating bad news was ideal for all patients. “I would have preferred if they had just said straight out it was cancer . . . I don’t like to be waffled with.” (No. 76/male/50s/rural) “He can reduce you to tears because you get no compassion from him, no warmth ‘This is what the position is, it is up to you’.” (No. 72/female/70s/ rural) “He (surgeon) came and saw me (in the ward) and drew the curtains round and said that there was a growth there—a growth there which was growing quite rapidly. He said if I didn’t have the operation I would need an undertaker’s box. I aye (always) remember going over and looking out at the window and I just wished I could have jumped right out of myself and run down (street name) road.” (No. 37/male/70s/urban)

Discussion This study was conducted with a broad range of patients in urban and rural locations throughout the North and Northeast of Scotland. It benefited from data being collected in different ways.17 In the focus groups,

Striking the right balance in colorectal cancer care

dialogue generated between rural and urban patients highlighted their priorities and attitudes and allowed areas of agreement and divergence between rural and urban participants to be identified.18 The in-depth interviews allowed the validity of the public opinions that emerged in focus group discussions to be tested in the privacy of patients’ own homes. They also ensured that the opinions of quieter participants and on more private matters (e.g. colostomies) were heard and discussed. All patients in the study had received care from specialist oncologists and surgeons from the two cancer centres in the area, so their views and experiences may have been limited in this regard. Many of the topics identified in the study are in line with previous reports in other cancers and have confirmed the importance to patients of rapid diagnosis and treatment.11 A previous qualitative study of patients with colorectal cancer in Canada reported that many patients blamed themselves for ignoring symptoms but did not report the same concern with provider delays before treatment that we found in Scotland.19 The wide variation in initial consulting behaviour we found (some presenting early and others delaying) mirrors that previously reported for dyspepsia.20,21 In dyspepsia, beliefs and concerns (e.g. fear of cancer) were better predictors of consulting behaviour than severity of symptoms.20 Expectations of health care (and life in general) could modify decisions to consult.21 We found that rural and urban patients had different expectations of care, with rural patients tending to present later and pursue their care less tenaciously—this may help explain the later stage presentation and poorer survival found for rural patients in Scotland and elsewhere.6–8 Communication of bad news remains important and of concern to patients despite changing doctor attitudes and guidelines that have sought to improve communication.22 A recent study reported that 87% of patients with cancer preferred to be given as much information as possible.23 Our findings confirm this for many patients, but show that others cannot cope with too much information. The importance of tailoring information to individual patients was highlighted in a recent systematic review;24 our study shows that patients from similar cultural backgrounds can have widely differing preferences for information and the manner of its delivery. In common with another recent study, we found that many patients with cancer need to be left with hope when receiving bad news; this was often true even when not strictly honest.25 The main implications of this study are that some of the key goals in colorectal cancer care (e.g. rapid diagnosis and treatment, and good communication) will not be achieved easily. Advice to patients to present earlier11 may benefit those who currently present late (if they heed the advice). It may also increase the number of patients who present early, are reassured by a benign diagnosis (the cancer undetected) and delay before

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re-consulting. Persuading GPs, and other doctors, to be more patient responsive26 may increase and hasten referrals for demanding patients. If, however, the system becomes jammed with urgent referrals, delays may lengthen for less demanding patients. Continuity of care, one of the four cornerstones of primary care,27 can contribute to delays in some circumstances (e.g. if the doctor gets locked into the wrong diagnosis). Finally, complete and open communication,22 whilst strongly desired by many patients, is not desired by them all. For communication to be tailored to individuals, both good knowledge of the patient (usually the domain of the GP) and full understanding of the cancer and possible treatments (usually the domain of the specialist) appear to be needed. Care in the health service is driven increasingly by standardized protocols, but care for individuals can be “uncertain, contradictory and complex”.28 This study has shown that rapid diagnosis, specialist treatment and good communication are important to patients, but are unlikely to be achieved in a uniform way. Ideal care for individual patients must strike the right balance in multiple ways.

Acknowledgements Many thanks to the doctors and nurses who helped us to recruit patients for interview: Mr A Munro, Dr MH Elia, Dr D Whillis, Fiona Robertson, Lydia Morrison and Sister Dawson in Inverness; Dr Fahreeda Ahmid, Martyn Main, Josanne Johnson and Peter Gent in Aberdeen; Louise Shakespeare in Caithness; and Kathryn McCall in Fort William. Thanks to Isobel McPherson and Sheena Donald who helped to conduct the focus groups. Special thanks to all the patients and relatives who took part in the focus groups and interviews. The study was funded by the Chief Scientist Office in the Department of Health, Scottish Executive. NCC was funded by a Cancer Research Campaign Primary Care Oncology Fellowship.

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