Use of qualitative research to analyze patient and clinician decision making in carotid...

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Use of qualitative research to analyze patient and clinician decision making in carotid endarterectomy Josephine Gibson, MSc, RN Carotid endarterectomy (CEA) is a well-established surgical procedure to reduce a patient’s risk of stroke by relieving stenosis of the internal carotid artery. However, the operation is not free from risk and may precipitate a fatal or disabling stroke. Attention in the previous literature has focused on clinicians’ decisions about CEA and has given almost no consideration of the patient’s perspective. This study describes the use of qualitative research techniques to study patients’ and surgeons’ perceptions of risk, information needs, and decision-making preferences in relation to investi- gations and treatment for carotid stenosis. Results of a pilot study are discussed in relation to 5 emerging themes: reducing uncertainty, weighing the odds, the chagrin factor, “whose decision,” and gains from surgery. The integration of these emerging themes with the literature on CEA is discussed in relation to the future direction of the project.(J Vasc Nurs 2002;20:60-5) BACKGROUND Several years ago, while working as a staff nurse on a vascular surgery unit, the author was intrigued by a situation unlike any other faced by patients on the unit. Approximately 120 patients per year were admitted for carotid endarterectomy (CEA), a surgical procedure intended to reduce the patient’s risk of stroke by relieving stenosis of the internal carotid artery. These patients were usually fit and feeling physically well when admitted, but they underwent surgery with no certainty of ben- efit. At least 2 patients had permanently disabling strokes after CEA during one year on the unit—an outcome that is, under- standably, the most feared by patients. 1 In contrast with many other patients who were being treated in an attempt to salvage an ischemic limb or to alleviate severe pain, the patients who underwent CEA had no or few current symptoms, in spite of previous transient ischaemic attacks or minor strokes. Their lack of somatic symptoms did not mean an easy time for the patient or the nurse, however. The central paradox of surgery, that patients in effect agree to be made temporarily more ill and run the risk of permanent harm, 2 was stark compared with their symptomatology. During discussion with the senior vascular surgeon on the unit, the initial idea emerged for a study of how patients cope with the uncertainty and potential risk of CEA. Three years and 2 job changes later the author was working as a vascular nurse specialist in a different hospital where she had both inpatient and outpatient duties. This provided insight into the processes of referral, investigation, decision making, and consent for surgery. It was apparent that the decision to have CEA was not as clear-cut as it might appear from the perspective of the ward nurse, who meets only shortly with patients before the operation. In addition to exploring patients’ perceptions, it was necessary to examine the decision-making process from the perspective of clinicians who were involved in the care of these patients. It was also apparent that information exchange was essential for these patients to give properly informed consent, especially in relation to the risks of surgery versus medical treatment alone. LITERATURE REVIEW CEA is commonly performed to correct severe carotid ste- nosis and reduce a patient’s absolute risk of having a stroke, but the operation is not without risk. Complications from surgery, such as a disabling or even fatal stroke, can arise in the first hours or days after surgery. If surgery is not carried out, the overall risk of mortality or morbidity from stroke is higher, but the risk is spread over a longer period of time (months or even years). Therefore patients are faced with a dilemma: undergo surgery and risk precipitating a stroke, or opt for nonsurgical manage- ment and live with the possibility of a stroke for the rest of their lives, with no certainty of benefit or harm with either option. 3 In spite of advances in vascular imaging techniques, it is impossible to predict which patients will have a stroke without surgical intervention. Approximately 1 in 5 patients with severe carotid stenosis will have a stroke with medical treatment alone; there- fore, it has been argued that 80% of CEAs that are performed according to current guidelines are unnecessary. 4 The effectiveness of CEA has been evaluated in 2 major trials, the European Carotid Surgery Trial (ECST) 5,6 and the North American Symptomatic Carotid Endarterectomy Trial From the Department of Nursing, University of Liverpool, and Southport and Formby District General Hospital, Southport, England. Address reprint requests to Josephine Gibson, MSc, RN, South- port and Formby District General Hospital, Town Lane, Kew, Southport PR8 6PN, England. Copyright © 2002 by the Society for Vascular Nursing, Inc. 1062-0303/2002/$35.00 0 40/1/125224 doi:10.1067/mvn.2002.125224 PAGE 60 JUNE 2002 JOURNAL OF VASCULAR NURSING www.mosby.com/vascnurs

Transcript of Use of qualitative research to analyze patient and clinician decision making in carotid...

Use of qualitative research to analyze patientand clinician decision making in carotidendarterectomyJosephine Gibson, MSc, RN

Carotid endarterectomy (CEA) is a well-established surgical procedure to reduce a patient’s risk of stroke by relievingstenosis of the internal carotid artery. However, the operation is not free from risk and may precipitate a fatal or disablingstroke. Attention in the previous literature has focused on clinicians’ decisions about CEA and has given almost noconsideration of the patient’s perspective. This study describes the use of qualitative research techniques to studypatients’ and surgeons’ perceptions of risk, information needs, and decision-making preferences in relation to investi-gations and treatment for carotid stenosis. Results of a pilot study are discussed in relation to 5 emerging themes:reducing uncertainty, weighing the odds, the chagrin factor, “whose decision,” and gains from surgery. The integrationof these emerging themes with the literature on CEA is discussed in relation to the future direction of the project.(J VascNurs 2002;20:60-5)

BACKGROUND

Several years ago, while working as a staff nurse on avascular surgery unit, the author was intrigued by a situationunlike any other faced by patients on the unit. Approximately120 patients per year were admitted for carotid endarterectomy(CEA), a surgical procedure intended to reduce the patient’s riskof stroke by relieving stenosis of the internal carotid artery.These patients were usually fit and feeling physically well whenadmitted, but they underwent surgery with no certainty of ben-efit. At least 2 patients had permanently disabling strokes afterCEA during one year on the unit—an outcome that is, under-standably, the most feared by patients.1 In contrast with manyother patients who were being treated in an attempt to salvage anischemic limb or to alleviate severe pain, the patients whounderwent CEA had no or few current symptoms, in spite ofprevious transient ischaemic attacks or minor strokes. Their lackof somatic symptoms did not mean an easy time for the patientor the nurse, however. The central paradox of surgery, thatpatients in effect agree to be made temporarily more ill and runthe risk of permanent harm,2 was stark compared with theirsymptomatology. During discussion with the senior vascularsurgeon on the unit, the initial idea emerged for a study of howpatients cope with the uncertainty and potential risk of CEA.

Three years and 2 job changes later the author was workingas a vascular nurse specialist in a different hospital where shehad both inpatient and outpatient duties. This provided insightinto the processes of referral, investigation, decision making, andconsent for surgery. It was apparent that the decision to haveCEA was not as clear-cut as it might appear from the perspectiveof the ward nurse, who meets only shortly with patients beforethe operation. In addition to exploring patients’ perceptions, itwas necessary to examine the decision-making process from theperspective of clinicians who were involved in the care of thesepatients. It was also apparent that information exchange wasessential for these patients to give properly informed consent,especially in relation to the risks of surgery versus medicaltreatment alone.

LITERATURE REVIEW

CEA is commonly performed to correct severe carotid ste-nosis and reduce a patient’s absolute risk of having a stroke, butthe operation is not without risk. Complications from surgery,such as a disabling or even fatal stroke, can arise in the first hoursor days after surgery. If surgery is not carried out, the overall riskof mortality or morbidity from stroke is higher, but the risk isspread over a longer period of time (months or even years).Therefore patients are faced with a dilemma: undergo surgeryand risk precipitating a stroke, or opt for nonsurgical manage-ment and live with the possibility of a stroke for the rest of theirlives, with no certainty of benefit or harm with either option.3 Inspite of advances in vascular imaging techniques, it is impossibleto predict which patients will have a stroke without surgicalintervention. Approximately 1 in 5 patients with severe carotidstenosis will have a stroke with medical treatment alone; there-fore, it has been argued that 80% of CEAs that are performedaccording to current guidelines are unnecessary.4

The effectiveness of CEA has been evaluated in 2 majortrials, the European Carotid Surgery Trial (ECST)5,6 and theNorth American Symptomatic Carotid Endarterectomy Trial

From the Department of Nursing, University of Liverpool, andSouthport and Formby District General Hospital, Southport,England.

Address reprint requests to Josephine Gibson, MSc, RN, South-port and Formby District General Hospital, Town Lane, Kew,Southport PR8 6PN, England.

Copyright © 2002 by the Society for Vascular Nursing, Inc.

1062-0303/2002/$35.00 � 0 40/1/125224

doi:10.1067/mvn.2002.125224

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(NASCET).7 Although some methodologic differences betweenthe trials were noted (eg, the estimation of internal carotid arterystenosis), both trials found that for patients with recent carotidterritory symptoms (amaurosis fugax or transient ischemic at-tack) and an ipsilateral internal carotid stenosis of 70% to 99%,surgery was more effective than conservative treatment in re-ducing long-term stroke or surgical death rate. In ECST the rateof stroke or death during surgery was 7.5%, with an additional2.8% risk of ipsilateral stroke in the 3 years after surgery,compared with a 3-year risk of 16.8% in the control group.5 InNASCET the rate of stroke or death was 5.8%, with an addi-tional 3.2% risk of stroke in the next 2 years, compared with26% in the control group. The incidence of fatal or disablingstrokes was also reduced in the surgical group (13.1% to 2.5%).7

In both studies, surgery was found to be less effective than thebest medical treatment for patients with stenosis of less than30%; whereas, for the patients with 30% to 69% stenosis, theoutcomes of either treatment were evenly balanced. The balanceof risks for surgical versus conservative treatment for asymp-tomatic stenosis has also been studied.8

A key variable of patients’ preferences and choices whenfaced with decisions about the management of carotid stenosis istheir attitude toward immediate- versus long-term risk. This hasnot been previously investigated. Adar et al9 aimed to evaluatepatients’ attitudes toward immediate- versus long-term risk inCEA, but the study only included healthy volunteers and recov-ering stroke patients. They were asked to indicate their hypo-thetic willingness to have CEA; suggested perioperative risk ofstroke was 2% and yearly stroke rates without surgery varied.The researchers found that as the nonsurgical stroke risk in-creased, so did the sample’s willingness to have surgery. Theauthors also concluded that additional research was required intothe attitudes and preferences of those who were genuinely facingthis decision and who were not included in their study. Inaddition, they concluded that the professionals’ responsibility inclinical practice was to provide the most accurate informationavailable to help patients to evaluate their chances and risks.

Other researchers10 have examined patients’ recall of thewritten and verbal information about their risk of stroke with andwithout surgery, by means of a postal questionnaire sent 1 monthafter consultation. Although most patients remembered that ifthey proceeded with surgery, their long-term risk of stroke wouldbe reduced, their recall of the actual figures was extremelyvariable. More than 10% thought that their risk of stroke duringsurgery was at least 50%, some thought there was no risk, and11% did not know. Many patients also wrongly believed thatCEA would improve symptoms such as angina or breathlessness.The authors concluded that patients either had little understand-ing of the risks of CEA or quickly forgot them.

Nurses play a vital role in ensuring that patients fully under-stand the relative risks of surgical and nonsurgical optionsregarding carotid stenosis, and in educating patients about theirpreoperative, postoperative, and conservative care.11,12 Clinicalexperience suggests that some patients have significant uncer-tainty both during their work-up for surgery, because they areaware they are at risk of having a stroke, and perioperatively,because they are aware of the compression of risk into a span ofa few hours as opposed to a span of months or years. In contrast

with the strong evidence base for the effectiveness of CEAprovided by the NASCET7 and ECST5,6 trials, little research hasbeen conducted on the decision-making processes undertaken bypatients with carotid stenosis, their perceptions of the relativerisks of the options available, their information needs, the psy-chologic effects of the waiting period before surgery, and thenursing implications of these factors.

DESIGN AND METHOD

The aims of the initial phase of the study were (1) to usequalitative interview techniques to explore the ways in whichpatients and clinicians comprehend, interpret, and live with therisks of CEA or conservative management for carotid stenosis,and (2) To use grounded theory analytical techniques13 to iden-tify themes for further study of patients’ information needs andthe decision-making process regarding carotid stenosis.

A grounded theory methodology was employed for this partof the study. This qualitative method uses the principles ofderiving data from the area of study itself, rather than from anagenda imposed by the researcher. A constant comparativemethod is used in data analysis to relate themes to each other andto generate an eventual theory that is “grounded” in the phenom-enon being investigated. This method is particularly suitable forstudies of previously unexplored topics.13

The researcher conducted a pilot study of 6 patients. Themesarising from this sample could be explored and refined in laterinterviews with an additional sample.

After obtaining local research ethics committee approval andmanagement agreement to conduct the study, convenience sam-pling was used to recruit participants via the vascular surgeryoutpatient clinic at the researcher’s employing hospital. Theseparticipants had consulted a vascular surgeon, had relevantinvestigations, and had reached a decision about their treatmentplan (CEA or conservative management alone). Interviews tookplace at the participants’ homes, typically 1 to 2 weeks beforesurgery and again 3 to 4 weeks after surgery (or at the equivalentintervals for patients having conservative management). Thepurpose of re-interviewing participants was to identify how, if atall, their perceptions had changed as a result of surgery or othertreatment and to clarify and validate emerging themes with theparticipants. Interviews were recorded on an audiotape andtranscribed by the researcher. A semi-structured approach wasused for the interviews to keep the interviews broadly “on track.”The interview schedule for patients outlined possible topic areas,such as risk, information, and decision making, but the content ofthe interviews was also guided by topics arising from theparticipants. Typical questions relating to 1 of the themes (risk)are shown in Box 1.

An interview schedule was devised for clinicians, includingdiscussion of 3 fictitious patient scenarios and the clinician’sexperiences and feelings about perioperative strokes. One clini-cian, a senior surgeon, was recruited by convenience samplingfor the pilot study and was interviewed at the researcher’sworkplace. The full study will include interviews with membersof staff who contribute to the care of these patients (staff fromsurgery, nursing, anaesthesiology, stroke medicine, and vasculartechnology).

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Notes taken before and after interviews and during transcrip-tion were also useful to gain additional data on the nonverbalcontent of the interviews and in beginning to identify overallthemes. By recording the interviews rather than taking contem-poraneous notes, it was possible for the researcher to engagefully in the interview. Participants seemed to relax quickly andfound the process of tape-recording unobtrusive.

The process of analysis entailed reading each transcriptthrough and then rereading closely to extract detail. Themeswere identified from the pilot study by examining the transcriptsand coding each section of dialogue. These codes were thenclustered with other related codes to generate some main themes.

RESULTS

The pilot study entailed interviews with 6 patients: 5 who hadCEA and 1 who had conservative treatment, and 1 vascularsurgeon. One patient (participant 4) had a disabling stroke 5 daysafter surgery and was not interviewed again. Interviews werebetween 25 and 53 minutes in duration.

Demographic and medical details of the sample are summa-rized in Table I. There were equal numbers of men and womenin the sample, with an age range from 50 to 79 years. Theirsymptoms had included amaurosis fugax, transient ischaemicattack, and minor stroke.

Five themes that emerged from this early work are describedbelow. A sample of quotes relating to each theme is shown inBox 2.

Reducing uncertaintySome patients perceived their risk of stroke without surgery

to be higher than it was, as an inevitability rather than the actualrisk of approximately 20% that was quoted to them. Even if theirperception was accurate, they believed that the uncertainty ofliving with continued risk if they did not have surgery wasunacceptable. It is noteworthy that after CEA, patients reportedfeeling psychologically and even physically better and said thatthey felt they could get on with their lives, compared with lifebeing “on hold” before the operation. The participants seemed toview CEA as an operation to reduce uncertainty, although astroke-free future was not guaranteed and there was a residualstroke risk after CEA of 1% to 2% per year.

Weighing the oddsAlthough the extent of patients’ deliberations about the

decision to have surgery varied, weighing the odds of surgicalversus nonsurgical intervention was a common theme. A 5%stroke risk from surgery was often quoted by patients, but itcould loom larger than its numerical value might suggest. Thenumerical risk of stroke with each treatment option was not theonly factor that influenced their decision. Participants also in-cluded the possible timing and location of a stroke (at hospital orat home) in the equation.

BOX 1

SAMPLE QUESTIONS FROM PATIENT INTERVIEW SCHEDULE (THEME OF RISK)

● Every type of medical treatment has pros and cons. What to you are/were the advantages and disadvantages of theoptions available (that is, surgery or medical treatment)?

● What are/were your feelings about this?

● Many people have worries or concerns when they are undergoing tests and treatment. What aspects of this situationwere a concern for you?

TABLE I

SUMMARY OF DEMOGRAPHIC AND MEDICAL DATA FOR PARTICIPANTS 1 THROUGH 6

Participantnumber Age Symptoms ICA stenosis Treatment

1 64 (R) amaurosis fugax (R) critical R CEA

2 man 64 (R) minor stroke (L) pseudo-occlusion (L) CEA

3 man 50 (L) TIA (R) 80% (R) CEA

4 woman 67 (L) minor stroke (R) critical (R) CEA

5 woman 58 (R) minor stroke (L) 80% (L) CEA

6 man 79 (R) TIA (L) 50%-59% Conservative

ICA, Internal carotid artery; L, left; R, right; TIA, transient ischaemic attack.

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BOX 2

SELECTION OF PARTICIPANTS’ COMMENTS RELATING TO EMERGING THEMES

Reducing uncertainty“If somebody tells you, you know, there’s a 50% risk of having a stroke, that’s in your mind all the time, so I’m hoping

that I can forget about it now.” (participant 1, after surgery)

“Oh, it’s at the back of your mind all the time . . . I used to think about having another stroke but now it doesn’t botherme at all.” (participant 2, after surgery)

“It’s the unknown isn’t it, that’s what makes you fearful, you don’t know what’s going to happen.” (participant 3, aftersurgery)

“Well, I wouldn’t like to be here and have one (stroke) on my own.” (participant 4, before surgery)

“So that’s why I’m having an operation and hoping it’ll take all this away.” (participant 5, before surgery)

Weighing up the odds“Oh, it had to be done. It was essential” (participant 1, after surgery)

“It’s the choice of either, the risk of having the stroke without having the operation or the risk of having one when I’munder the operation . . . it’s just the chance you take like anyone else does I suppose” (participant 2, before surgery)

“That 5% became a great big bubble . . . it was like Windows on Microsoft . . . I could open this one and this would pop up,or that would pop up, and all these questions had to be answered . . . so it was quite a big 5%” (participant 3, beforesurgery)

‘[The surgeon] said 20% but when he seen me after the scan he said it’s only 6% . . . the operation, getting through theoperation, a stroke’ (participant 4, before surgery)

“I asked him to go through the operation with me . . . I like to know exactly what’s going to happen, so I can weigh upthe pro’s and con’s” (participant 5, before surgery)

The chagrin factor“I’d have been worried about having a stroke, it would have curtailed my activities I suppose wouldn’t it” (participant 1,

after surgery)

‘If I didn’t have it [surgery] and then I had another stroke then it could be . . . worse . . . put me in a wheelchair. So thenI would feel sick if I didn’t have the operation’ (participant 2, after surgery)

“I’d be stupid, absolutely stupid (not to have surgery). And I would be putting not only me, my situation in jeopardy,I’d be putting everybody else’s situation in jeopardy” (participant 3, before surgery)

“You’re damned if you do and damned if you don’t, I mean I’d have a stroke if I didn’t have it, and I might have thestroke under the operation.” (participant 4, before surgery)

“I blame myself for all my complications.” (C1 surgeon)

Whose decision?“Right at the beginning I felt presenting the way it did, in my eyes rather than with a stroke, I felt that the way we’ve

been was the only way to go. I couldn’t ignore it, I went through the motions of finding out why I was having eyeproblems and I was being shown the way really, carried along.” (participant 1, after surgery)

“I had to make the choice in the end . . . nobody forced me into anything. You know, saying you’ve got to have it”(participant 2, before surgery)

“I think it’s obviously down to me initially, but . . . at the end of the day there was no decision, it was ’yes, we’ll do it’”(participant 3, before surgery)

“[My son]said to [the surgeon] ‘there’s seven of us and we’ve talked about it,’ and he (surgeon) said ‘it’s nothing to dowith you, it’s down to your mother’” (participant 4, before surgery)

“I knew that day I was having to make a decision about surgery . . . the decision was mine, he [the surgeon] satpatiently and waited for me to make, to weigh it up” (participant 5, before surgery)

“I make the decision first, I think. Because I choose which line of explanation to go down.” (C1, surgeon)

Gains from surgery“It’s early days yet to really feel any benefit from it” (participant 1, after surgery)

“Well, I feel great about it now.” (participant 2, after surgery)

“I now know that I’m a happier person, physically and emotionally.” (participant 3; after surgery)

“You go in (for surgery) and you think, oh yes, now you’ll have a new lease of life, whereas you come round andyou’re not like that at all, slow slow progress” (participant 5, after surgery)

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Chagrin factorThis theme was captured by 1 patient who said that if he

didn’t have surgery and then had a stroke, “I’d be kickingmyself, if I could.” The chagrin factor, or retrospective regret,has been postulated in the context of clinicians’ decision makingabout CEA,14 but it emerged as an important factor for patientsas well. Not having surgery and then suffering illness was, forsome patients, seen as worse than having a complication fromsurgery: it was better to try and fail than not to try at all. Patientsfaced the possibility of a stroke during surgery as a misfortunerather than someone’s fault. For surgeons, however, the oppositemay be the case. Having a patient have a perioperative stroke hada personal and professional effect for the surgeon, who said, “Iblame myself for all my complications.”

Whose decision?The patients’ role in decisions about CEA is an area that is

full of contradictions and needs a great deal of exploration.Patients usually believed the decision to have CEA was theirs,not the surgeon’s. However, they also believed the informationgiven to them had led them to the right course of action. Adistinction could be made between advising on treatment options(the clinical staff’s role) and decision making about the treatment(the patient’s role). In these processes, the trustworthiness of theclinician and the reliability of investigation results were impor-tant factors to the patients and the surgeon in having confidencein the appropriateness of the chosen option. The use of intuitionin making a decision about surgery was raised by both patientsand surgeon: patients used intuition to decide whether theywould entrust their care to the surgeon, and the surgeon usedintuition to decide whether it was appropriate to offer patients asurgical option.

Gains from surgerySurprisingly, some patients expected to feel better after

surgery and did feel better, apart from residual minor discomfortfrom surgical incision pain and neck stiffness. However it isemphasized by the surgeon that the operation is a preventive one.This theme needs to be additionally explored. It may be a resultof the reduction in concern about a possible stroke after surgeryor simply a reduction of the anxiety that exists before surgery ofany kind. A placebo effect may also be at work: patients simplyexpect to feel better after surgery. Two other studies10,15 havealso identified similar phenomena.

Although only 1 patient undergoing conservative treatmenthas been interviewed so far, it appears that this line of treatmentis not perceived as a major decision-making issue to the sameextent as surgery. This patient perceived that he would have nostroke risk with conservative treatment.

DISCUSSION

The patients’ role in decisions about stroke-risk reduction islittle researched and discussed in the literature, although it isimportant in clinical practice and to patients themselves. Thecentral themes of risk, information, and decision making wereused as a starting point for this study to explore patients’viewpoints.

As the pilot study progressed it became apparent that, al-though the themes of risk and decision making were important,other topics such as information, informed consent, and thefindings of randomized trials were of marginal interest to pa-tients, no matter how important they were to health profession-als. The numbers quoted to the patient during consultations, suchas degree of stenosis and risks of surgery versus conservativemanagement, are certainly remembered although not alwaysaccurately. However, these ıgures did not appear to play a largepart in their decisions. The decision to have surgery was only oneelement of the experience of living with the risk of stroke.

Among the most pertinent findings to emerge were thecontrasts between the patients’ views and traditional medicalconcerns. For example, the medical literature abounds withdiscussion of the importance of patient information in relation toinformed consent and decision making.16 However, informationwas not a dominant theme in the interviews and seemed to beregarded as a necessary but relatively small part of the decision-making process. There were also many contradictions in theprocess of decision making. Clinicians use fairly clear-cut crite-ria on the basis of the major randomized trials when consideringwhether to offer patients CEA. For patients, the decision couldbe equally clear cut or more complex, but in either case it wasnot an easy one and carried great emotional significance.

CEA has a strong evidence base in the form of majorrandomized controlled trials and the use of sophisticated diag-nostic imaging. It is important for clinicians to know how to usethis evidence for the benefit of patients, particularly in obtaininginformed consent. The emerging issues for patients themselves,however, are not so much about information, consent, or ran-domized trials, but about the meaning and reality of their ownsituation. Exploring these differing agendas and trying to recon-cile them will be a major goal of additional data collection.

Direction for future workThe initial idea for this research emerged from a difficult and

poignant dilemma facing patients. Having explored the literatureon CEA, it was established that there had been few similarstudies. The findings of this pilot study suggest that the availableliterature on CEA sets a totally different agenda from that ofpatients, and it rarely discusses their views. The issues ofdecision making and information have emerged in the data inunexpected ways and as a backdrop to the central issue of livingwith the chance of stroke, as it affects both patients and clini-cians. The new themes that have emerged are more complex andneed more detailed analysis than has been attempted thus far.

The aim of the next phase of the study will be to explore thelinks and contradictions between the emerging themes to createa richly detailed account of the meaning of risk-reducing surgeryand its implication for clinical practice. Data is now beingcollected with patients and a wider range of clinicians, withemphasis on detailed field notes as well as the interview tran-scripts as sources of data.

The nurse’s role in the care of patients with carotid stenosisneeds to include support in relation to decision making, infor-mation relating to surgery, and, just as importantly, advice aboutnonsurgical options. An exciting development, which is becom-ing increasingly common practice, is the provision of new “fast

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track” services to improve the timeliness and quality of the careprovided to patients referred with transient ischaemic attack.17

This will be an ideal opportunity to implement the study’sfindings and to enhance the nursing contribution to the care ofthese patients. In this way the results of this research, whicharose from a problem in clinical practice, will come full circle toenrich future nursing care.

I thank my supervisor, Professor Caroline Watkins, for hercontinuing advice and support in relation to this project and forher comments on drafts of this article.

REFERENCES

1. Solomon NA, Glick HA, Russo CJ, et al. Patient preferencesfor stroke outcomes. Stroke 1994;25:1721-5.

2. Fox NJ. The social meaning of surgery. Milton, Keynes:Open University Press; 1992.

3. Hankey GJ. You need an operation. Lancet 1999;353(Suppl1):35-6.

4. Hoefnagels W. Carotid surgery can be hazardous for yourhealth [letter]. Lancet 1999;354:2165.

5. European Carotid Surgery Trialists’ Collaborative Group.MRC European carotid surgery trial: interim results forsymptomatic patients with severe (70%-99% or with mild(0-29%) carotid stenosis. Lancet 1991;337:1235-43.

6. European Carotid Surgery Trialists’ Collaborative Group.Randomised trial of endarterectomy for recently symptom-atic carotid stenosis: final results of the MRC EuropeanCarotid Surgery Trial (ECST). Lancet 1998;351:1379-87.

7. North American Symptomatic Carotid Endarterectomy TrialCollaborators. Beneficial effect of carotid endarterectomy insymptomatic patients with high-grade stenosis. N Engl J Med1991;325:445-53.

8. Benavente O, Moher D, Pham B. Carotid endarterectomy forasymptomatic carotid stenosis: a meta-analysis. Br Med J1998;317:1477-80.

9. Adar R, Adar R, Cohen E, Kreitler S. Carotid endarterec-tomy for symptom-free stenosis: the patient’s point of view.Cardiovasc Surg 1994;2(5):582-5.

10. Lloyd AJ, Hayes PD, Bell PRF, et al. The role of risk andbenefit perception in informed consent for surgery. MedDecision Making 2001;21:141-9.

11. Arthur J. Carotid disease. In: Murray S, editor. Vascular disease:nursing and management. London: Whurr Publishers; 2001.

12. Bradley M, Pearce WH. Extracranial cerebrovascular dis-ease. In: Fahey VA, editor. Vascular nursing. 3rd ed. Phila-delphia: WB Saunders Co; 1999.

13. Strauss A, Corbin JM. Basics of qualitative research:grounded theory procedures and techniques. Newbury Park(CA): Sage; 1990.

14. Matchar DB. Decision making in the face of uncertainty: the caseof carotid endarterectomy. Mayo Clin Proc 1990;65:756-60.

15. Incalzi RA, Gemma A, Landi F, et al. Endarterectomy forrecently symptomatic carotid stenosis [letter]. Lancet 1998;352:143.

16. Coulter A, Entwistle V, Gilbert D. Sharing decisions with pa-tients: is the information good enough? Br Med J 1999;318:318-22.

17. Department of Health. National service framework—older peo-ple. Standard five: stroke. London: Department of Health; 2001.

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Qualitative research on decisions re: carotidendarterectomy

Contact Hours: 1.0 Minimum Passing Score: 70%Test ID: JVN02602 Test Processing Fee: $10.00

OBJECTIVES:

1. Describe the patient’s and surgeon’s perception of risk related to CEA.

2. Discuss emerging themes associated with qualitative study of CEA.

3. Integrate themes with future directions on CEA.

1. What are the chances of a patient with severe carotidstenosis experiencing a stroke when only medicaltreatment has been given?

a. 10%b. 20%c. 50%d. 80%

2. Of the 2 studies described, surgical intervention wasmost effective with which amount of stenosis?

a. Less than 30%b. 30%-50%c. 50%-69%d. More than 70%

3. One month after consultation for CEA, whatpercentage of the patients felt their risk wasat 50%?

a. 10%b. 25%c. 50%d. 11%

4. Participants in this study viewed CEA as a(n):a. Guarantee to be stroke freeb. Procedure to reduce uncertaintyc. Inevitable surgeryd. Uncertainty equal to conservative treatment

5. The risk of conservative treatment is viewed as:a. The same risk as surgeryb. Less risky than surgeryc. More risky than surgeryd. No risk

6. Of the 6 participants, what treatment modality wasselected by the patient with 50%-80% ICA stenosis?

a. RCEAb. LCEAc. Conservatived. No treatment

7. Of the 6 participants, what treatment modality wasselected by the patient with the left pseudoocclusion?

a. RCEAb. LCEAc. Conservatived. No treatment

8. What percentage of CEAs that are performedaccording to current guidelines are consideredunnecessary?

a. 10%b. 25%c. 50%d. 80%

9. The selected patient comments related to the “gainsfrom surgery” had an overall theme of:

a. “I made a mistake.”b. “Nothing has changed.”c. “This was the right thing to do.”d. “I was misled.”

10. What was the methodology used in this study?a. Grounded theoryb. Quantitative analysisc. ANOVAd. Descriptive

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70%JVN02602Qualitative research on decisions re: carotidendarterectomy