‘people sometimes react funny if they're not told enough’: women's views about the...

‘People sometimes react funny if they’re nottold enough’: women’s views about the risksof diagnostic laparoscopy

Jane Moore MRCOG*, Sue Ziebland MSc� and Stephen Kennedy MRCOG*

*Nuffield Department of Obstetrics and Gynaecology, John Radcliffe Hospital, Oxford, UK, �Cancer Research UK General Practice

Research Group, University Department of Primary Health Care, Institute of Health Sciences, Oxford, UK

CorrespondenceJane Moore

Specialist Registrar in Obstetrics &

Gynaecology

Nuffield Department of Obstetrics &

Gynaecology

John Radcliffe Hospital

Headington

Oxford OX3 9 DU, UK

E-mail: [email protected]

Accepted for publication31 May 2002

Keywords: chronic pain, diagnostic

laparoscopy, pelvic pain, qualitative

interviews, risk communication

Abstract

Objectives To explore women’s views about the risks and benefits of

diagnostic laparoscopy in the investigation of chronic pelvic pain,

including how much information it is thought appropriate to give

about three specific risks: death, major complications and the chance

that the procedure would have an inconclusive result.

Design A qualitative analysis of semi-structured, audio-taped in-

terviews with 20 women about their experiences of undergoing a

diagnostic laparoscopy in a day surgery unit. Interviews were

conducted 3–6 months after the procedure.

Results All the women who were interviewed were aware that

diagnostic laparoscopy carried risks, including the small risk of

death associated with general anaesthesia. One-third of respondents

said that they had initially been reluctant to discuss the risks of the

procedure in general terms. However, when specific examples of

complications and risks were introduced all but one of the

respondents reported that they would have liked to discuss these at

the time that the decision to have the operation was made. Women

maintained that the information was needed to make an informed

decision about whether to have the operation, to help them

understand and cope should things go wrong and in order to make

appropriate plans to cover contingencies. Most were surprised to

hear that the procedure is frequently inconclusive and thought that

this information should be made clear to women contemplating a

laparoscopy.

Conclusions Women undergoing diagnostic laparoscopy for the

investigation of chronic pelvic pain wish to be given full and

accurate information about complication rates such as bowel

perforation, what to expect during their recovery, and the chances

of finding a cause for their pain. Although they may not want to

dwell on the risk of death, they do need to be informed about the

specific risks associated with the procedure in order to make a

balanced decision.

302 � Blackwell Science Ltd 2002 Health Expectations, 5, pp.302–309

Introduction

Chronic pelvic pain (CPP) is common, perhaps

as common as low back pain in primary care.1 It

has traditionally been investigated with diag-

nostic laparoscopy which has risks in common

with all invasive procedures. However, little is

known about how patients view these risks and

balance them against their chronic symptoms.

The probability of suffering a major complica-

tion (an unplanned event such as bowel perfor-

ation with potentially serious consequences)

during a diagnostic laparoscopy is 2.4 per 1000,

leading in approximately two-thirds of cases to a

laparotomy.2,3 Approximately 3% of patients

will suffer minor complications, such as pro-

longed vomiting.4 Another factor, which may

not always be perceived as a �risk� of the proce-dure, is that diagnostic laparoscopy fails to

identify a cause for pain in approximately 40%

of cases.5,6

The decision to investigate CPP with a diag-

nostic laparoscopy is usually made in a gynae-

cology outpatient clinic. The gynaecologist will

weigh factors such as the likelihood of finding

pathology and the severity of the patient’s

symptoms against the risks of the procedure.

The gynaecologist’s decision may be influenced

by subtler and perhaps subconscious factors,

such as the insistence of the patient to take

things further but, in our experience, the risks of

the procedure have not routinely been explained

to the patient at the time that the decision is

made.

Several studies have explored the effect on

anxiety of giving patients detailed information

about the risks of the procedure they are un-

dertaking. There is a perception among some

patients and doctors that �too much� informationmay increase anxiety, but this does not seem to

happen in practice.7–9 Neither does the provision

of information about available procedures

necessarily increase demand for them. A qualit-

ative study that examined the effect of giving

information about the BRCA1 gene for breast

cancer on acceptance of a test found that

enthusiasm for the test often waned when

additional information about the complex

implications of the results was provided.10

Another study, involving 21 women with CPP

12–18 months after an inconclusive laparos-

copy, illustrated how difficult the lack of a

diagnosis was for many women. However, the

women were reassured to learn that many other

women with chronic pelvic pain also have a

negative laparoscopy.11

As far as we are aware, the exploratory study

reported in this paper is the first attempt to

investigate women’s views of the risks and

benefits of diagnostic laparoscopy in the

investigation of chronic pelvic pain. The aim of

the study was to explore the women’s views of

risk and discuss how much information they

thought it appropriate to provide about three

specific types of risk associated with the pro-

cedure: death, major complications and the

chance that the diagnostic procedure would

have an inconclusive result.

Methods

All patients on the waiting list for diagnostic

laparoscopy to investigate chronic pelvic pain at

one large teaching hospital were invited by letter

to participate in the study. Women were ap-

proached before their operation in an attempt to

avoid biasing the sample because of operative

findings or experiences. The letter emphasized

that the researcher had no involvement in their

clinical care, but stated that she was �a female

colleague� of the consultant endorsing the study.Patients wishing to participate were asked to

return a consent form and pre-operative ques-

tionnaire with socio-demographic data, and

were contacted 2–3 months after the laparos-

copy. Interviews were conducted by JM in the

woman’s home or in the hospital research office

according to the woman’s preference. The in-

terviews were �in-depth� and semi-structured,

lasting between 40 and 60 min. They were all

audio-tape recorded and transcribed verbatim.

The open-ended nature of the schedule was de-

signed to encourage the interviewee and resear-

cher to pursue areas of interest. An 11-month

period of operations was covered, from

September 1998 to July 1999.

Women’s views about the risks of diagnostic laparoscopy, J Moore et al.

� Blackwell Science Ltd 2002 Health Expectations, 5, pp.302–309

303

Respondents were invited to describe their

experiences of living with chronic pelvic pain,

the events that led to the decision to have a

diagnostic laparoscopy, and their experience of

the procedure and recovery. The interviewer

asked specific questions about sources of infor-

mation, awareness of different sorts of risk and,

after introducing specific information about

these risks, she discussed their views about the

appropriateness of communicating them to

women before the procedure. Approval for the

study was given by the Central Oxford Research

Ethics Committee.

Analysis

The transcripts were initially read and reread

by JM to look for emerging themes, i.e. key

areas of concern or interest to each woman.

When the transcripts had all been analysed and

initial themes established, the parts of each

interview that were identified as relating to each

theme were all grouped together and examined

again. The coding scheme was developed

through discussion with SZ, who read a selec-

tion of the transcripts and brought a social

scientist’s perspective to the data. Using the

method of constant comparison, theories were

developed to describe the way women with

chronic pelvic pain talked about the risks of

diagnostic laparoscopy. In this method, a the-

ory emerges from the data and is then tested

against all the interviews. The data which do

not fit with the theory are used to modify it,

and the theory is again tested against the

complete data set. This iterative process results

in an explanation of the data which can reliably

claim to account for all the views and inter-

pretations expressed by the respondents. Tran-

scripts were analysed for emerging themes as

the study progressed, and interviewing contin-

ued until no new themes were being identified,

the point at which �data saturation� was

achieved.12 Subject to informed consent from

the participants the interviews will contribute

to a DIPEx (database of individual patient

experience) website on chronic pelvic pain see

http://www.dipex.org.

Results

The recruitment procedure and response rate is

summarized in Table 1. The women interviewed

were representative of patients with chronic

pelvic pain undergoing diagnostic laparoscopy

in this hospital in terms of age, occupation,

duration of symptoms and operative findings.

Table 2 shows the characteristics of women who

were interviewed and those who did not respond

to the introductory letter. All participants were

Caucasian. None experienced a complication.

The risks of laparoscopy

All the women interviewed were aware that

things could go wrong during a diagnostic

laparoscopy. They viewed risk in general as an

inescapable part of life and something which

they encountered on a daily basis. In discussing

the risks, women acknowledged that surgeons,

being human, can make technical mistakes,

although nobody raised the concern that they

might have been operated on by an incompetent

surgeon.

At the end of the day you know, I guess, I’m kind

of open minded that if it’s for you it won’t go past

you, so that’s just one of these things, I can’t help

it and I don’t suppose they can help it either,

accidents happen. (AN 13, a well informed

32-year old)

The reluctance to discuss openly the risks and

benefits of procedures was seen as contributing

Table 1 Response rate to introductory letter

65 letters originally sent

34 replies received

Initial response rate: 52%

Of 34 eligible replies received

2 declined to participate

1 not eligible, because laparoscopy was for infertility

4 telephone numbers unobtainable ⁄ no reply

2 did not undergo laparoscopy

2 repeatedly failed to attend for interview

3were not interviewed because data saturation

had been met

20 women were interviewed

Participation rate: 31%


Women’s views about the risks of diagnostic laparoscopy, J Moore et al.304

to the difficulty of understanding what had

happened if things did not go according to plan.

I think, like years ago things used to go wrong in

childbirth, things used to go wrong in this, that and

the other. Now I think we’ve got used to the fact

that things not don’t go wrong but you very rarely

hear about it … And maybe we’ve been lulled into

a false sense of security … Maybe we’ve been sort

of, you know, everything’s been so good and all

this technology and all the rest of it, there’s just the

thought that if you turned around and said 1 in 200

end up with a big scar, bowel trouble and all the

rest of it, em, how can it go wrong, it’s supposed to

be hi-tech. (HL 10, a member of the military).

The interviewer asked how much they had

wanted to know about �risk in general�. In re-

sponse to this initial question about one-third of

the women said that, at the time of the opera-

tion, they had not wanted to discuss the risks of

diagnostic laparoscopy. All seven who expressed

this view reported they had felt that they had no

choice about whether to undergo the laparos-

copy (either because their doctor had recom-

mended it or because they were desperate to find

an explanation for the pain) that being given too

much information would have frightened them.

No I wouldn’t want to know, because I probably

wouldn’t have had it done if they’d have gone all

through that. But you know yourself really, any

sensible person knows that there are risks in any-

thing. (RH 5, a single mother of two)

The remaining two-thirds of the women felt it

was their right to know and that doctors ought

to inform patients fully.

It’s not fair not to be told and then finding out …I think everyone has a right to know. (SR17, an

18 year old student)

Three specific types of risk were then intro-

duced for discussion. These were the risk of

dying during the operation, the risk of a major

complication such as bowel perforation and the

risk of having an inconclusive result. The results

are summarized in Table 3 and discussed below

with illustrations from the interviews.

Risk of death

When asked directly, all the women knew that

there was a risk of dying during a general an-

aesthetic. Although opinions varied as to how

explicitly this should be discussed there was a

consensus that this risk is common knowledge

and that it should be mentioned but not high-

lighted. Women did not want to be encouraged

to dwell on this known risk immediately before

the procedure, but some mentioned that they

would be reassured to have the risk quantified

because it is so low.

I think it is important that people know exactly

what the consequences are if something goes

wrong, but at the same time you know, you remind

them that these are highly qualified, professional

people that have spent a long time and a lot of

hours in an operating theatre and they really

do know what they are doing. (AN 13, a well

informed 32 years old)

Risk of major complications

All but one of the women would have liked to

have known about the risk of major complica-

tions, so as to make her own judgement about

the balance of risks. Several were quite shocked

as they had no recollection of being informed

Table 2 Characteristics of interviewees and non interviewees

(women who underwent laparoscopies but were not inter-

viewed)

Interviewees

n ¼ 20

number (%)

Non interviewees

n ¼ 25

number (%)

<25 3 (15) 4 (16)

25–29 4 (20) 7 (28)

30–34 9 (45) 5 (20)

>35 4 (20) 9 (36)

Occupation

At home with children 4 (20) 7 (28)

Unskilled worker 2 (10) 2 (8)

Trained 9 (45) 9 (36)

Professional 5 (25) 7 (28)

Operative findings

Normal 9 (45) 9 (36)

Pathology 11 (55) 16 (64)

Duration of symptoms 41 (mean) 46 (mean)

(months) 6–144 (range) 6–1 68 (range)

Of the 65 originally approached 1 was ineligible, 11 did not have their

laparoscopies and for eight details could not be obtained.


Women’s views about the risks of diagnostic laparoscopy, J Moore et al. 305

about the possibility of major complications

arising. The reasons that women gave for

wanting accurate information about possible

complications and the duration of recovery, in-

cluded the need to make contingency plans.

They felt that knowing before the operation

about the possibility of major complications

would have helped them to cope and perhaps be

less frightened had the complication arisen.

If you woke up from the operation and were ex-

pecting a little scar there and then all of a sudden

they’re telling me I’ve got a massive scar and

you’re thinking �Well, why? what�s going on?’

you’re going to panic aren’t you? (TS 6, a mother

of two small children)

The prior knowledge would also have allowed

them to make appropriate contingency plans.

�Well I think you know, it�s always nice to weigh

the benefits against the risk and then at least we

could have made that as an informed decision that

could have had serious consequences. I don’t think

my husband and I, we hadn’t sort of prepared for

all that so it could have been fairly devastating.

(SG 11, a mother who travels professionally)

The one woman who said that weighing up

the risks was almost irrelevant to her explained

that she was so desperate to find out what was

wrong that she felt she had no choice.

I accept there’s an accepted risk in all things, I, in

the foremost of my mind was that I was going to

find out what was wrong with me and what was

causing the pain, and that overrode anything else

that was maybe associated risk-wise with the op-

eration. (HL 10, who had suffered from painful

intercourse since her 1-year-old son was born)

Risk of an inconclusive result

Eleven women were surprised that the chance of

not finding a cause for their pain was as high as

40%. All the respondents thought it was some-

thing they would like to have known, and for

some, it might have changed the balance of risks

and benefits and influenced their decision to

have the operation.

If there’s a one in three chance that they won’t find

a cause for your pain, why bother going through

all that. (KC 12, a 38-year-old-waitress)

Reasons for wanting to know included feel-

ing that it would have been easier to come to

terms with a negative result had they known it

was so common and the reassurance of know-

ing that other women had negative laparos-

copies too.

It’s quite interesting, in some ways relieving, be-

cause I sort of think I’m a fraud you know because

you have all your tests done and nothing’s wrong,

am I imagining it? and it’s good to hear that other

women have the same thing. (SPO 20, a graduate

whose symptoms had been suggested endometri-

osis)

This echoes the findings of Savidge et al.

study11 and supports the view that there are

other, as yet unrecognized, explanations for

Table 3 Reasons for wanting and not wanting information about specific risks of the diagnostic laparoscopy

Type of risk Reasons for wanting information Reasons for not wanting information

Risk of death Patient should know possible consequences Too scary or off putting

Reassurance, because it is rare Accepted risk

To discuss with partner

Risk of major complication

(2.4 per 1000)

Less afraid if it happens Off putting

Informed decision Accepted risk

Planning Might lose faith in doctors

Doctor’s duty

Patient’s right

Risk of an inconclusive result

from procedure (40%)

Changes balance of risks, None

might decide not to have procedure

Helps to interpret own result



pelvic pain. As one respondent, a data analyst in

whom no pathology was found, reasoned,

women may have a �chronic pain that medical

science can�t pinpoint.’ (CB8)

How did women weigh up the risks?

Women in this study had gathered their infor-

mation about risk from a number of different

sources, such as the hospital, personal and

family experiences, work colleagues and the

media. All these influences, the reliability of

which is variable, may be taken into account

when a woman is weighing up the risks and

benefits of diagnostic laparoscopy. Factors that

women thought particularly important included

the likely consequences of any complications,

the benefits that this operation might bring

them, and the disruption to both their work and

domestic roles.

The extent to which women made use of

specific numbers to balance risk varied consid-

erably. For some, numbers were meaningless

and did not figure in their assessments. Women

who were more comfortable with figures

attempted to weigh up the level of risk to them

personally, including mentally calculating the

frequency with which a complication might arise

in their particular hospital, or comparing the

risks stated with other activities which they knew

to have risks, such as childbirth.

The respondents thought that most women

would want to know about the risks of the

operation, but that they must be informed

sensitively and at an appropriate time. Some

expressed the view that, whether or not

patients asked, doctors had a duty to inform

them about the risks of a procedure. Others

recommended that the women should be able

to lead the discussion, to go into as much

depth as they felt comfortable. A couple of

women volunteered that, in the event of a

complication, their attitude to litigation would

have been influenced by whether or not they

had been informed about the possibility

beforehand. As one woman pointed out

�People sometimes react funny if they�re not

told enough’ (SR 16).

Discussion

This study was exploratory and intended to

identify women’s views about communicating

the risks of diagnostic laparoscopy. A qualitat-

ive methodology with women who had a recent

experience of the procedure was chosen as the

most appropriate method of encouraging

women to present their own perspectives of the

procedure. Although the sample is small it is

broadly representative of women attending for

diagnostic laparoscopies at the hospital con-

cerned. The analysis and data collection con-

tinued until no new categories were being

identified, to ensure that a wide range of views

were included.

Some factors may limit the generalizability of

the results. The women were all treated at one

hospital and were interviewed some weeks after

their laparoscopies, which may have affected

recall. It is known that patient recall of verbal

information about risk can be poor.13 However,

this study did not attempt to audit what infor-

mation had actually been given, but explored

how much information women who had recent

experience of the procedure thought it appro-

priate for women to be given. The women who

responded to the initial questionnaire and those

who were interviewed were similar on most of

the criteria we measured although the non-

interviewees had more pathology and longer

duration of symptoms. There were no black or

minority ethnic women in the interview sample

and relatively few women from lower social

classes responded. It is possible that additional

issues might have been identified if the sample

had been broader.

There was a strong consensus of opinion

about risk communication within the study

group. All but one of the respondents felt that

the possibility of major complications should be

discussed before the operation. Although about

one-third initially said that they would be re-

luctant to discuss risk in general because it was

too frightening or might put them off, when the

specific complications were discussed they felt it

was important that patients should be told.

Knowing the risks could help them to plan



appropriately, both for their expected recovery

and to make contingency plans in case things

went wrong. It was also important to them to be

told that the test might be inconclusive. Not only

would this help with the decision about whether

the operation was worthwhile, but knowing that

diagnostic laparoscopy is so often negative

would help women to interpret the result.

Women used information in different ways to

weigh up the risks and benefits of diagnostic

laparoscopy. In this study, risk was described

using the expression �one in so many� and also inpercentage terms to describe the risk of bowel

perforation. Other studies have shown that

people find it difficult to grasp descriptions of

risk in numerical terms, and suggestions have

been made of more effective ways to communi-

cate the degree of risk.14 Terms such as �high�,�low� or �negligible�, have been recommended to

make it easier for lay people to understand how

a risk applies to them. However, the meanings of

these words, and the underlying characteristics

of the risk carry very different weights for dif-

ferent people. Patients have widely varying

needs, and several formats can be used to pro-

vide information about risk, including words,

numbers and pictures. It may be possible to use

people’s natural tendency to �anchor� risk in

their personal experience, as the women in this

study attempted to do. In a review of the diffi-

culties of risk communication, Bogardus et al.

emphasized the role of the physician as provider

of information and supporter in the decision-

making process.15 A qualitative study of GP

registrars’ views about communication of risk

used a range of tools, including qualitative, nu-

merical and graphic data and found that regis-

trars were concerned that adequate discussion of

risk takes time, and requires ready access to

good quality information, both for patients and

their doctors.16 A recent review of the growing

literature on risk communication concluded that

it is most effective when used with patients

who are making treatment decisions, rather

than for preventive health behaviours, such as

screening.17

The General Medical Council has revised its

advice to doctors about the nature of informed

consent. It is for the patient, not the doctor, to

determine what is in the patient’s best interests.

Thus, patients must be given sufficient infor-

mation to enable them to make informed deci-

sions about their care.18 Patients have the right

to information about the risks of procedures

they may undergo and doctors have a duty to

find ways of discussing it. This has implications

for format and timing of the information given

to patients as well as for the length of consul-

tations, if decision-making is to be shared.

Conclusions

While women may seem reluctant to discuss

�general risks� they had a very different attitude

to the three specific risks introduced in the in-

terviews. Women said that they should be pro-

vided with full and accurate information about

complication rates, what to expect during their

recovery and the chances of finding a cause for

their pain at laparoscopy. This information is

needed in order to make a balanced decision, to

make appropriate plans and, in the event of the

complication arising, to help them understand

and cope with the situation.

Acknowledgements

JM was supported by an educational grant from

Searle Pharmaceuticals Ltd. We would like to

thank all of the women who took part in the

study, Eleanor McDonald for transcribing the

interview tapes and Alison Chapple for helpful

comments on an earlier version of the paper.

Contributors

JM designed the project, collected all the inter-

views and analysed the data. SZ guided the data

collection and analysis and drafted the paper

with JM. SK contributed to the study design and

the final paper.

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