Women's perceptions of decision-making about hysterectomy

Authors


*Ms Z. Skea, Health Services Research Unit, University of Aberdeen, Polwarth Building, Foresterhill, Aberdeen AB25 2ZD, UK.

Abstract

Objective  To explore women's views of decision-making relating to hysterectomy.

Design  Structured questionnaire and in-depth interview surveys.

Setting  A teaching hospital and a district general hospital in northeast Scotland.

Sample  Women scheduled for hysterectomy for benign menstrual problems.

Methods  Pre-operative questionnaires were sent to a consecutive sample of women booked for hysterectomy. A purposive sample was interviewed post-operatively.

Main outcome measures  Women's experiences of, and satisfaction with, information provision, communication and decision-making processes; the relationship between views of decision-making processes and decisions made.

Results  One hundred and four women (66%) returned questionnaires. Most responded positively to structured questions about the process by which the decision to have a hysterectomy was reached. Almost all (97%) reported satisfaction with the decision made. Twenty women were interviewed post-operatively. A number, including some who had responded positively on the questionnaire, described aspects of the decision-making process that were suboptimal. Women's perceptions of the decision-making process, including the way their doctors communicated with them, did impinge on their views of the course of action selected. Some women had residual doubts about the appropriateness of hysterectomy.

Conclusions  In a significant minority of women, there are important shortcomings in current patterns of information provision and communication relating to decision-making. These are unlikely to be picked up by conventional structured patient feedback surveys. Further efforts are required to ensure that women are adequately informed and involved in decisions about gynaecological treatments.

INTRODUCTION

Although there has been a slight decline in rates of hysterectomy in recent years,1,2 it remains the most frequently performed major gynaecological operation in the United Kingdom. One in five women can expect to have a hysterectomy by the age of 60, mainly for menorrhagia, and the uterus is found to be normal on histological examination in 40% of these cases.3 Various surgical and non-surgical options exist for this condition,4–9 and there is increasing recognition of alternative routes for hysterectomy, including laparoscopic.10

Choice of treatment for menorrhagia is highly sensitive to individual preferences,11 and the elective nature of surgery should allow women to engage with and influence treatment decisions. However, studies from the United Kingdom and the United States have suggested that while women are generally satisfied with the effect of hysterectomy on their symptoms,12–14 many have felt they have received inadequate information and/or support from health care professionals.12–18 Governmental, health professional and health care provider organisations increasingly stress the importance of providing detailed information about treatment options to patients and the participation of patients in treatment decision-making19–22 but the extent to which this is happening is unclear.

We report findings from a study that used structured self-completion questionnaires and in-depth interviews to explore women's perceptions of and satisfaction with various aspects of decision-making relating to hysterectomy.

METHODS

We calculated that a sample size of at least 100 women would enable us to estimate satisfaction rates with decision-making to within 10% based on the assumption that the worst possible scenario involves a satisfaction rate of 50% (95% confidence intervals 40–60%).

Between March 2001 and April 2002, we invited 157 consecutive women who were due to be admitted to hospital for hysterectomy with any of 10 consultants for benign menstrual problems to participate in this study. Women with suspected or confirmed gynaecological malignancy were excluded. Letters and questionnaires were sent to women with admission documents three weeks before surgery. When this was not possible (practical problems led to some eligible women within the consecutive sample not being identified in time by hospital staff), the letters and questionnaires were offered to women when they were admitted to the ward the day before surgery. A consent form within the questionnaire asked women to indicate their willingness to be interviewed while in hospital, and/or to allow their medical notes to be reviewed for this study.

The development of the questionnaire was based on existing literature about information provision and patient participation in treatment decision-making and our previous work with women undergoing hysterectomy.23 The questionnaire was piloted with nine women who met the study eligibility criteria and was refined slightly in response to their comments.

The questionnaire focussed on information provision, communication and decision-making relating to hysterectomy during recent visits to hospital clinics. It included a five-item version of the Satisfaction With Decision scale24 (excluding a question about whether or not the women expected to successfully carry out their decision) and items from the Decisional Conflict Scale.25 The concluding section of the questionnaire asked women whether the questionnaire had raised any concerns for them.

Questionnaire responses were analysed using SPSS (Chicago, Illinois).

A purposive subsample of 20 women was interviewed by ZS about their experiences of decision-making. The first four women approached were a consecutive convenience sample. The remaining women were selected on the basis of their questionnaire responses to ensure variation in terms of reported gynaecological problems, previous treatments, perceived treatment options, and perceptions of the amount of information and support received from their doctors.

The interviews took place in a quiet room off the ward shortly before the women were discharged from hospital. They were semistructured with two main phases. We initially sought to elicit a description in the women's own words of the events that led to them having a hysterectomy. We then explored their reasons for selecting particular responses to a few of the questions on the questionnaire.

The interviews were audiotaped and transcribed in full and analysed using a modified ‘framework’ approach.26 We constructed a chronological summary of each woman's ‘problem and treatment story’ and created charts in which we summarised each woman's account of the ‘process by which the decision to have a hysterectomy was reached and implemented’ and ‘evaluations of the decision to have a hysterectomy’. After examining the first four interview transcripts and charts, we identified an initial set of themes to consider in more detail. Issues identified in the initial analysis were examined in more detail in subsequent interviews.

Clinical details were extracted from the case notes of consenting women. Ethical approval was obtained from the Grampian Research Ethics Committee.

RESULTS

Of 157 women invited to participate, 104 (66%) responded to the questionnaire. Their ages, clinical characteristics and the surgical procedures they underwent are summarised in Table 1.

Table 1.  Clinical characteristics of sample and grade of doctors consulted with. Values are given as range [mean] or n (%).
Data from questionnaires (n= 104)
  • a

    n= 103.

Age (years)27–58 [43]
Paina
 Women reporting periods are ‘usually painful’77(76)
Severity of bleeding
 Light bleeding2 (2)
 Moderate bleeding12 (12)
 Heavy bleeding with clots56 (54)
 Very heavy bleeding with flooding34 (33)
Duration of bleeding
 Less than 3 days1 (1)
 3–7 days56 (54)
 8–10 days29 (28)
 More than 10 days18 (17)
 
Data from case notes (n= 102)
Principal pre-operative diagnosis
 Uterine fibroids52 (51)
 Dysfunctional uterine bleeding27 (27)
 Endometriosis13 (13)
 Other causes10 (10)
Operation performed
 Total abdominal hysterectomy72 (71)
 Subtotal hysterectomy14 (14)
 Vaginal hysterectomy9 (9)
 Laparoscopically assisted vaginal hysterectomy7 (7)
 Bilateral oophorectomy32 (32)
 Unilateral oophorectomy10 (10)
Histopathology report
 No uterine pathology37 (36)
 Uterine fibroids45 (44)
 Ovarian cysts5 (5)
 Endometriosis8 (8)
 Fibroids and endometriosis1 (1)
 Fibroids and ovarian cysts1 (1)
 Other5 (5)
Post-operative complications
 None74 (73)
 Haemorrhage5 (5)
 Wound infection5 (5)
 Urinary tract infection5 (5)
 Vault infection10 (10)
 Low grade pyrexia3 (3)
Status of consulting doctor at outpatients
 Consultant66 (73)
 Specialist registrar year 4 or 514 (16)
 Junior specialist registrar (years 1–3) or senior house officer10 (11)

The 20 women who were interviewed ranged in age from 36 to 53 years. Their questionnaire responses were similarly distributed to those of the whole sample.

In response to a question on the questionnaire about what they had thought about hysterectomy before they saw the consultant or hospital doctor for the first time, 48% of women said either that they had been sure they wanted a hysterectomy or that they thought they probably wanted one, 15% had thought hysterectomy might be an option but wanted to avoid it if possible and 11% said they had not thought about a hysterectomy as an option at this stage.

Thinking back to their first outpatient appointment, most women (74.3%) said they had been hoping to work out what treatment options were available in conjunction with the doctor. Only 4% had wanted the doctor alone to do this and 2% had been hoping to work out their options by themselves. Similarly, 76% had been hoping that they would select the treatment together with the doctor, 3% had wanted the doctor alone to decide and 4% had wanted to decide themselves.

On questionnaires, most women reported having been given some information about the advantages and disadvantages of hysterectomy and other treatment options during outpatient appointments (Table 2). However, between 17% and 34% said they were given too little information about these types of issues (Table 2). Most women gave positive responses to several different questions about the adequacy of information provision to support decision-making, but over a quarter responded neutrally or negatively to these questions (Table 3).

Table 2.  Pre-operative perceptions of provision of information about hysterectomy and other options. Values are given as %.
 nThe doctor gave me information about this
YesNoNot sureNot applicable
Advantages of hysterectomy997415110
Possible risks and side effects of hysterectomy98553951
Treatments other than hysterectomy99741637
Advantages of treatments other than hysterectomy955825611
Disadvantages of treatments other than hysterectomy9544321510
 
 nThe information I was given was
Too littleAbout rightToo much
Advantages of hysterectomy8917830
Possible risks and side effects of hysterectomy6034642
Treatments other than hysterectomy8119784
Advantages of treatments other than hysterectomy7125704
Disadvantages of treatments other than hysterectomy6234660
Table 3.  Pre-operative perceptions of adequacy of information to support decision-making. Values are given as %.
 nStrongly agreeAgreeNeutralDisagreeStrongly disagree
The doctor gave me all the information I needed to understand the decision.101234916112
The doctor gave me all the information I needed to make the decision.10120541692
I was given all the information I needed about the issues that are important to the decision.102155220103
I was adequately informed about the issues important to the decision.101155814112

In the interviews, comments about information provision were generally less positive. They suggested that women had not always been enabled to weigh up the advantages and disadvantages of hysterectomy and other treatment options for themselves. In their descriptions of the events leading up to their hysterectomy, some women said they had been given less information about treatment options other than hysterectomy, and/or that these had been presented as temporary or inferior options. Women also reported receiving less information about the possible disadvantages than about the advantages of treatments. For example,

I don't think there was enough information. There was no leaflets, no nothing. They couldn't tell me much. How the laser would work compared to the hysterectomy, what the difference was. I think anybody that's getting laser treatment should get more information: how it works, what the effects are afterwards. But I was never told what would actually happen, or what would happen afterwards. Hysterectomy I got more information. (040)

He just said there were medications available that could help reduce the endometriosis or the bleeding but he never said in what way or how they worked or anything like that…he never ever spoke about any disadvantages of those other treatments and he didn't speak about any disadvantages of hysterectomy, so I was left thinking, well, is there any disadvantages or not…I would've just preferred more information about the advantages and disadvantages of the different treatments available. (013)

I did ask about…laser treatment or something else…and [the doctor] said ‘that is just an operation as well and you would be as well having a hysterectomy’. It was not, ‘Well I will tell you what happens with that’ or ‘You would be better with this’. (096)

Several women also highlighted the problem of not knowing enough in advance to be able to identify the kinds of questions they wanted to ask in consultations. If a doctor revealed a problem or suggested a treatment option in the consultation, women who had no prior warning and little background understanding felt they were put ‘on the spot’ and had little idea what to discuss.

But I didn't ken at the time what I really wanted to know…I mean I could have asked him a lot more had I been aware of what was going on. (073)

I think they could talk a lot more about it. I think the time that you're in the room is far too quick because they ask you if you've got any questions, well off the top of your head you don't have questions you just ‘wow’, you know, it just hits you there and then [being told you might need a hysterectomy]…When I went into the last consultation, I just thought it was an ovary problem, not a uterus problem so I wasn't prepared for the questions. (010)

On questionnaires, 10% of women said there had been questions that they did not ask during their outpatient consultations. These included questions about what the operation would involve, whether their ovaries and/or cervix would be removed, and their recovery after the operation. Eighty-one percent of women said they had tried to find more information in addition to that provided by their doctor(s). They sought this information for a variety of reasons (Table 4).

Table 4.  Types and purpose of information sought by women in addition to that provided by doctors. Values are given as n (%).
Women who sought information other than that provided by doctors84 (81)
 
Nature of information sought (n= 84)
About what hysterectomy would involve (e.g. how the operation is done)66 (78)
About what effects hysterectomy would have on menstrual symptoms48 (57)
About other possible effects of hysterectomy (e.g. how you may feel)54 (64)
About what other treatment options would involve32 (38)
About what effects other treatment options would have on period problems27 (32)
About what you might need to take after the hysterectomy (e.g. hormone replacement therapy)35 (42)
 
Reasons for obtaining information (n= 83)
To help discuss or make the decision about hysterectomy32 (39)
To help prepare myself for a hysterectomy65 (83)
To help discuss or understand other treatments19 (23)
To check that the right decision had been made36 (43)
Just wanted to know more46 (55)

The women who were interviewed also described seeking information and/or talking things through with their family, friends and/or general practitioner in the interval between the outpatient appointment at which hysterectomy was agreed and their admission for surgery. It was not uncommon for them to feel they required more information than was given at hospital clinics. The information they sought and found was of different types, and served a variety of purposes. Some discussed wanting (or appreciating finding) information about: alternatives to hysterectomy, procedures involved in hysterectomy, possible risks or disadvantages of hysterectomy, and post-operative recovery.

Responses to a question on the questionnaire about whether it had raised any questions or concerns for women revealed that it had highlighted knowledge gaps for several.

Concerned [I] didn't discuss how operation would be done. (093)

How much I do not know. (074)

Lack of information. I found the survey more informative than my sessions with the consultant. (073)

It has undermined my confidence in the amount of information I was given before deciding on hysterectomy. (077)

The interview data confirmed this, and suggested that the questionnaire had prompted some women to seek further information from their doctors.

Most women gave positive responses to questions on the questionnaire about how helpful the doctor was during decision-making (Table 5).

Table 5.  Pre-operative perceptions of how helpful the doctor was during decision-making. Values are given as %.
 nExperiences
Strongly agreeAgreeNeutralDisagreeStrongly disagree
Felt supported by doctor9736341199
Felt reassured by doctor10128561051
Doctor listened to me10133501070
Doctor seemed sympathetic1004833974
Doctor took his/her time with me1013253772
Doctor addressed my questions and concerns10128521380
Doctor asked for my opinion1021470881
Doctor understood my problems1012955862

In the interviews, however, several women described less than ideal encounters with their doctors. Some had apparently felt inadequately supported in their decision-making because doctors were ‘abrupt’ with them, did not appear to care, and/or hurried them to ‘make up their minds’. For example,

He just didnae seem interested…Whether that's just his manner, maybe he has a problem speaking to folk…I mean I feel quite disloyal to him now because he's been really quite nice while I've been in, but…it does not alter the fact that he wasnae nice to me through any of the time that I've seen him. If they would just be a bit more sympathetic. (073)

[The doctor was] just so abrupt and could not wait to get you out. (096)

It was quick, I just had to decide there and then because he was in a hurry, and I was just taken into a room and it was a case of ‘Right, that's what we've found, that's what I suggest, but it's up to you what you want’, and away he was again. (013)

Other circumstances also affected women's views of the quality of the decision-making process. Conditions in some consultations were apparently not conducive to a calm discussion of treatment options. For example,

I burst into tears because I didn't expect—, I was just lying there my legs sort of—, you know. I just sort of went ‘Wait a minute, let me get sat up to discuss this’. But it was just basically, he would advise a hysterectomy. But it was a bit of a shock because there was lots of people in the room and there was like students and there was a nurse and I had my son there as well…my wee boy was drawing dinosaurs behind me. It was all a bit of a shock, so I didn't really have time to think about it. (009)

However, for some women, these kinds of problems had apparently been avoided or minimised by doctors taking time and care to explain the issues clearly, and offering women an opportunity to go away and think whether or not they wanted a hysterectomy. Women who had been encouraged to discuss their options with family and friends seemed to appreciate this (although not all felt they needed such discussion):

[The doctors] took time with me and they never hurried me if I had something to ask. They sat down, they explained things to me, which helps. (041)

[The consultant] said discuss it with somebody else and I did…They told me to take my time and just go away and think about it and it was about a couple of weeks before I went back and said ‘Yes, go for it’…They weren't hurrying me, they weren't telling me to come back the next day…I would not have done it if they did say come back the next day, it would have been too big a hurry. But I got plenty of time to think about it, which was fine. (036)

On the questionnaire, most women gave positive (but not strongly positive) responses to questions about the decision to have a hysterectomy (Table 6). The mean [SD] score on the five-item version of the Satisfaction With Decision scale was 4.1 [0.52], indicating a high level of satisfaction (the maximum possible score is 5).

Table 6.  Pre-operative perceptions of the decision to have a hysterectomy. Values are given as %.
 nStrongly agreeAgreeNeutralDisagreeStrongly disagree
I am now sure that hysterectomy is best for me.1004248730
The decision is consistent with my personal values.10226591510
I am satisfied with the decision.1023958120
I am sure of what I am doing.1024053700
The decision to have a hysterectomy reflects what is important to me.1012764810

From the interviews, it was clear that women's thoughts about the decision to have a hysterectomy could vary during the time between the clinic visit at which it was agreed and the hysterectomy being carried out. Several women described reflecting on their symptoms and their tolerability, noticing changes in their symptoms, considering the information they had, and thinking back over their encounter with the doctor and the reasoning that underpinned the decision. Their views about the appropriateness of the decision could change as they obtained information from various sources and discussed their proposed hysterectomy with family and friends. For example, a woman who had been reluctant to have a hysterectomy at the time of her clinic visit, but was put on the waiting list and given the option of cancelling at any time explained how she came round to the idea of hysterectomy:

I was putting it to the back of my mind you know [the possibility of hysterectomy]…because I would've actually liked another [child]…Just actually talking to other people, reading books…and reading leaflets, things like that…yes, just to reinforce myself: ‘Okay, you're not going to get any better, so you know you've got to get it done’…I was influenced by my mother,…My mother and my sister both put pressure on me to be honest…But that was through how she's seen that I've been over the last couple of years… (009)

The extent to which women reconsidered their decision varied. Some seemed committed to the decision once (or before) it had been agreed. They tended to obtain and read information that supported their decision and one described avoiding reading information that might have led her to ‘change her mind’. A few women described going through stages of thinking that they would not ‘go through with’ the hysterectomy.

At the time of their interviews, most women seemed pleased they had had a hysterectomy. However, a few expressed ‘residual doubts’ about it. For example,

It was basically him [decided what treatment option to select] with me in the end agreeing to it, and I didn't really. Although I've agreed to it, there's not much I can do about it now. As far as the kids were concerned I'd had my quota and that was it…but there was other pros and cons to hysterectomy. I just wish I had sat down a bit longer and read about it, because I might not have got it done. (003)

Well I wasn't told of any disadvantages. To be quite honest I still haven't found out any either so I don't know. I presume there are some but I haven't found out what they are. It's a bit late probably to start asking now. (013)

The potential impact of the way doctors discuss decisions on women's perceptions of those decisions was highlighted by a woman who described two separate consultations about her menstrual problems. The first was with a consultant whom she recalled arrived late, greeted her in an ‘off putting’ way, did not seem to have read her notes, suggested that she should ‘just have a hysterectomy’ because of her age, and ‘brushed aside’ her questions about other possible treatment options. In her interview, the woman described how upset she felt after this consultation and explained she had concluded that she could not undergo a hysterectomy ‘with someone like that’. The second consultation, with a different consultant, was a more positive experience. The woman recalled that he ‘was understanding’, ‘put it to you nicely’ and ‘explained everything’. She commented that ‘the difference was unbelievable’ and ‘you sort of need things explained for you to be able to make the decision that you feel is right and it is difficult’. Although she thought with hindsight that the first consultant had probably made an appropriate recommendation of hysterectomy, the way he communicated with her had negatively influenced her view of that recommendation at the time.

Overall, the interviews lent strong support to the possibility that women's confidence in the decision could be affected by various aspects of the decision-making process, including the ways doctors communicated with them, the information they were given and the extent to which they considered the advantages and disadvantages of different options for themselves.

The women who were interviewed had various suggestions for improving information provision and communication to support their decision-making, and generally let them know what to expect. These included the following: provision of basic information materials prior to attendance at gynaecology clinics, with explanations about possible investigations, their potential findings and the kinds of treatments that might be suggested; checklists for clinic doctors outlining all the relevant information topics; opportunities for women to ask questions before hospital admission; earlier provision (pre-hospital admission) of information about what is involved in a hysterectomy and about recovery post-hysterectomy; and opportunities to talk with other women who have had hysterectomy.

There was some apparent discrepancy between the overall pattern of positive responses to the structured questionnaire questions and the concerns revealed in the interviews. While some women were generally very positive in both questionnaires and interviews, other women who gave relatively positive responses on their questionnaires were more critical during interviews. One reason for this discrepancy was that some women gave positive questionnaire responses to reflect ‘overall’ experiences, but identified specific negative experiences in their interviews. For example, this woman stated on the questionnaire that she was ‘satisfied’ with the way her doctor had supported her and with the way she had been reassured in the consultation, but talked in her interview about how she had felt hurried to make a decision in the consultation:

I think it was more because he was in such a rush and he didn't really, I don't know but he didn't give me the information that I wanted, he was just that's an option, choose whether you want it or not and cheerio I'll see you when you come in for your operation which, that was his final words as he was going out the room. (013)

Others explained during interviews that they gave ‘agree’ or ‘satisfied’ responses rather than ‘strongly agree’ or ‘very satisfied’ responses because they had been only moderately impressed with the aspects of care they were asked about. Their comments during interviews revealed the features of their care that had seemed less than ideal. For example, a woman who answered ‘satisfied’ on her questionnaire to the question ‘How satisfied were you with the time the doctor took with you in the consultation’, said in her interview:

I felt I could have had more information from [consultant], I still feel consulting times are far too quick, you're in and you're out and that's it. (010)

Another woman who ‘agreed’ with three statements on her questionnaire, ‘I am satisfied with the decision’; ‘I'm sure of what I'm doing’; and ‘It was clear which treatment choice was best for me’, said in her interview:

[The consultant] convinced me it was needed, at the moment I still don't know…But he's convinced me that it was for the best so I'll just have to take his word for it. (003)

Our investigation of women's reasons for picking ‘neutral’ (midpoint) responses also highlighted the fact that women can have diverse reasons for picking a particular response option on a structured questionnaire. The range of reasons included:

  • 1Mixed (positive and negative) experiences of an aspect of careIn relation to a question about whether the doctor had answered all her questions and concerns:

I basically picked ‘neutral’ because then I wasn't saying yes and I wasn't saying no, because there was some questions that I got him to finally answer and there was a lot of questions that I didn't get him to answer. (003)

  • 2Inability to evaluate the quality of an aspect of careIn relation to a question about whether all relevant information was provided:

The information that I've written about, that's all I knew about. So whether they were telling me everything or not, I wouldn't have known. So the information that they gave me, I took it to be all information…And if there was anything else I wouldn't have known about it. So it was just best to be neutral on that one. (062)

  • 3Lack of understanding of the question or statement:In relation to a question about whether all issues relevant to the decision had been discussed:

I didn't know what that one was about…There was no issues explained. (062)

  • 4Uncertainty whether the question or statement was relevant to them:In relation to a question about whether the doctor seemed to understand her problems/concerns:

I picked that because I really didn't have any problems as such. (010)

  • 5Perceiving hysterectomy as inevitable and being ‘accepting’

I am quite neutral about all this because I just know it had to be done and I've accepted it…I've not really had a lot [of information]. As I said…until I came on Friday morning for my pre-operation thing, I didn't really know what was actually going to happen you know…I mean if I'd gone to the doctor and said ‘Look, sit down and tell me all about it’—but you know I never did that…I think it just shows that I'm a very accepting person. (009)

Overall, the insights from the interviews suggest that generally positive or neutral responses on questionnaires may obscure some specific negative experiences and perceptions on the part of the women.

DISCUSSION

Most women scheduled for hysterectomy for menstrual disorders reported positively about information provision and communication in outpatient clinics when responding to general questions with structured response options. However, in semistructured interviews, some women revealed concerns about these aspects of their care. Both the questionnaire data and the interviews suggest that at least a substantial minority of women do not feel adequately informed to make or fully understand the decision for hysterectomy.

The use of two complementary methods of data collection was a key strength of this study and allowed us to gain some insight into the reasons for the apparent discrepancy between positive questionnaire responses and more negative interview accounts. Women were likely to give moderately positive or neutral responses on questions if they had mixed positive and negative experiences, did not feel confident about evaluating an aspect of care, perceived hysterectomy as necessary and/or were generally accepting of the way things were. In the more in-depth interviews, women were more likely to mention specific negative experiences and concerns or uncertainties about aspects of the quality of care.

Our methods have some limitations that need to be taken into account when interpreting our findings. Firstly, we collected data from women's perspectives only (we did not record consultations and did not survey doctors). Secondly, in both questionnaires and interviews, we asked the women to give retrospective accounts. It is not clear how well women were able to ‘think back’ and focus accurately on encounters with hospital doctors in outpatient clinics as asked. It is possible that their recollections could have been influenced by their intervening experiences.27 However, we were trying to gauge women's perceptions of what happened in the past (irrespective of whether these perceptions were ‘correct’ or ‘justified)’. Although perceptions may change over time, this does not render them unimportant or wrong. Thirdly, practical recruitment problems led to some women being offered the pre-operative questionnaire on their admission to hospital. Although they were asked to ‘think back’ to recent outpatient visits while completing the pre-operative questionnaire, they may have had more opportunities to ask questions about hysterectomy since their admission. The extra information obtained could be reflected in their questionnaire responses and might lead us to overestimate the adequacy of information provision during outpatient visits. Lastly, we obtained a fairly low response rate of 66%, which perhaps could be partially explained by the length of the questionnaire. Ethical requirements of the study did not allow us to obtain details about non-responders.

We only sought the views of women who agreed at their outpatient appointments to proceed to hysterectomy and we interviewed only women who underwent the procedure. We cannot comment on the views held by women who attended outpatient appointments at which hysterectomy might have been considered but who either were not offered or decided against hysterectomy.

Despite its limitations, we believe that our study provides useful data about an important but relatively under researched aspect of clinical gynaecology. Our questionnaire data are consistent with those from other studies in showing that women report high levels of satisfaction with hysterectomy.28 Our interview findings agree with previous qualitative studies that have highlighted concerns about inadequate information provision and support for women undergoing hysterectomy.12–18 In addition, our study highlights that while the majority of women report general satisfaction with decisions about hysterectomy, the extent of their involvement appears (from their perspective) to fall short of the high standards set out in current policy documents.

Our observation that some women who gave generally positive responses to structured questions about satisfaction and other perceptions of care relating to hysterectomy nonetheless recounted suboptimal experiences during interviews is supported by reports from other areas of health care about the types of feedback that are elicited from patients when they are asked different types of questions and in different contexts.29–32

While the problems with information provision and decision-making might be partly due to shortcomings in the attitudes and communication skills of individual doctors—and in particular, their orientation to engage women in decision-making processes—they are probably also partly due to ‘systems factors’: features of the way health care is currently organised. We did not carry out a systems-oriented investigation, but the women's accounts suggest that current care pathways (i.e. usual sequences of consultations, investigations, communication and admission for surgery) and the limited time available for discussion between consultants and women may militate against informed deliberation and discussion of treatment decisions by women. In gynaecology clinics, more time is usually allocated to ‘new patients’ as opposed to ‘return visits’, but it is at these return visits that decisions about major surgery are made. An investigation of the provision of a dedicated decision-making counselling session after women have been given information about their diagnoses and treatment options found that this intervention reduced the proportion of women opting for hysterectomy and improved their long term satisfaction with the decision.33

Various interventions have been proposed to improve the provision of information and decision support for patients,34 and interventions suggested by women in this study are among those that warrant investigation.

The provision of introductory ‘orientation’ materials for women who are referred to outpatient clinics might help women prepare for the investigations and decisions they might face, and enable them to make the most of opportunities to ask questions in consultations. This may be harder to do in a general gynaecology clinic because it is not always clear from referral letters what women's problems are,35 but might be more readily achieved within a dedicated menstrual clinic.36 However, we think it remains possible that general introductory information (about the types of investigations that might be conducted in a menstrual clinic) could still be helpful. The information could convey that not all procedures would be offered to all women, but individual women could be offered procedures appropriate to their specific case.

Formal decision support materials might also be helpful.33,37 Their effectiveness seems to be enhanced by the provision of a dedicated decision-making counselling session.33 When doctors are convinced hysterectomy is the best treatment option for women, women are likely to find these recommendations more acceptable and to be more confident about this decision, if they are given explanations of why the doctor thinks hysterectomy is better.

Some women would clearly appreciate early access to some of the information that is currently provided after hospital admission (about the processes involved in hysterectomy and about post-operative recovery). Women's experiences of not thinking of questions during a consultation but remembering them afterwards are quite common. The offer of a discussion with a member of the consultant's team (for example a liaison nurse) before hospital admission is likely to be appreciated by women. Such services have been offered before38 and preliminary indications suggested that they resulted in women feeling better prepared for a hysterectomy. A less costly alternative could be to give women explicit permission or encouragement to contact the ward with questions before their admission.

Our interview data suggest that efforts to improve information provision and the processes of decision-making from women's perspectives may improve women's perceptions of the decision made and reduce the likelihood of subsequent regret. It has been shown in other clinical settings that people with high satisfaction with decision scores are more likely to ‘follow through’ on agreed decisions and attend for scheduled surgery.39

The differences between the types of information we obtained from structured questionnaires and from in-depth interviews with women confirms the limitations of using broad questions that generally elicit positive responses from women. To use feedback from women to improve quality of care, gynaecology teams should focus on specific sources of concern and potential reasons for dissatisfaction. These might best be elicited using qualitative methods, including interviews with patients and/or by specific questions about experiences of aspects of care that have been found during interviews to be important to patients and potentially problematic.40

CONCLUSIONS

A significant minority of women undergoing hysterectomy for menorrhagia experience shortcomings in information provision and communication relating to decision-making. These are unlikely to be identified by conventional structured patient feedback surveys. Efforts to improve decision-making processes for patients should address both the communication approaches of individual doctors and the framework of consultation systems within which these decisions are made.

Acknowledgments

The authors would to thank the all the gynaecological consultants in Aberdeen and Elgin who supported this study and allowed access to their patients. The authors would also like to thank all the women who participated in this study.

This study was funded by the Chief Scientist Office of the Scottish Executive Health Department. The Health Services Research Unit receives core funding from the Chief Scientist Office of the Scottish Executive Health Department. The views expressed are those of the researchers and not necessarily those of the funders.

Statement of Contributorship

The study was initiated by an idea of SB, in discussion with AT. SB led the writing of the research proposal and application for funding and was the principal investigator for the study. The questionnaire was developed by SB, ZS and VE, and the interview topic guide by ZS, VE and BW. ZS, VH and SB facilitated the recruitment of women to the study. Clinical case note data was extracted by VH. Interviews were conducted by ZS. GM and ZS analysed the questionnaire data, and ZS, VE and BW analysed the interview data. ZS led the drafting of this article, which was developed in discussion with SB, VE and BW. All authors contributed to editing and approved the final version.

Accepted 16 October 2003

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