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It is widely accepted that women should be given information and be involved in decision-making during pregnancy. This basic principle of good practice and patient autonomy has been highlighted in national guidelines as an issue since the early 1990s. The National Institute for Health and Clinical Excellence (NICE), a UK Government organisation seeking to provide evidence-based advice to patients and clinicians, has as one of its key recommendations ‘Pregnant women should be offered information based on the current available evidence together with support to enable them to make informed decisions about their care’ in each of its last three pregnancy guidelines. Although this sounds straightforward, there is a notable lack of research into how best to give information to pregnant women and an ongoing debate regarding the process.1–3 How important is information giving and how much information do women want? When should we give it, how much detail should we give and who should do it? What aids can we use to support this process and how should we define risks and outcomes for women?

Many reports suggest that women want information and involvement in decision making. For example, almost 50% of women contributing to a survey for the UK National Sentinel Caesarean Section Audit Report (published by the RCOG Clinical Effectiveness Support Unit in 2001) indicated that they would like more information on benefits and risks of caesarean.4 In a systematic review on support in childbirth, involvement in decision-making was found to have a high impact on satisfaction with childbirth experience.5 Similarly, Waldenstrom in 2004 found that in relation to care during labour, a lack of participation in decision making was a risk factor for a negative birth experience.6

Women receive information from a wide variety of sources. There is a wealth of information available from sources as diverse as health professionals and their professional bodies, friends and family, hospital leaflets and the internet. But despite the abundance of formal information sources, studies suggest that previous experience and perceived benefits may have the most impact. 7,8

Clinicians and patients alike appear to be only too aware of the unregulated and at times dangerous nature of the advice available online (on the internet). In an attempt to address this, various official organisations nationally and internationally produce their own online advice for women and there have also been attempts at website certification. It is difficult to know the impact of increased access to the internet as there are no large studies looking specifically at the sources of information used by women. However, a recent small study (of 26 women) by Moffat et al. found that the major source of information was healthcare professionals, although one woman relied on the internet.7 All participants felt that within the internet, both peer support networks and medical journals were useful.

Three papers in this month’s BJOG provide us with a further insight into the process of information giving, both from the women’s and the healthcare workers perspectives and explore ways in which we might improve our practice.9–11 Although all three focus on the mode of delivery, they provide wider lessons for information giving in general.

The paper by Kingdon et al. looks in detail at over 200 women’s views of choice regarding mode of delivery, during their first full-term pregnancy and 12 months later.9 Many women felt they could not or should not have a choice about mode of delivery when interviewed before their baby was born, but, as with other studies, their views were not static. It turns out that the women taking part in this study felt that the most important thing was the safe delivery of their baby and appreciated that the situation can change during pregnancy, even if they had a prior preference for mode of delivery. Few held fixed views on their proposed delivery mode––most were willing to accept the opinions of their doctor as to what was best for the benefit of themselves and their baby.

The other two papers are nested within the DiAMOND study, a randomised trial comparing the use of a computerised decision analysis programme with usual care.12 The computer programme led women through a series of questions about the risks of vaginal birth after caesarean (VBAC) and repeat caesarean and produced a suggested preference for caesarean or VBAC based on their answers. In the quantitative study published last year in the BMJ, they showed a statistically nonsignificant trend towards vaginal birth in the decision analysis group. However, maternal anxiety and conflict surrounding decision-making was significantly reduced in the two intervention groups, a finding similar to previous randomised trials of decision-aids in obstetrics and gynaecology.13,14 The qualitative papers published today examine women’s views of computer-based resources to aid decision-making based on structured interviews and the views of health professionals prior to implementation of decision aids.10,11

In the decision aid studies, both women and healthcare professionals felt that decision aids were a useful tool, but that there still needed to be support from obstetricians during the pregnancy. Healthcare professionals felt decision aids would allow women more standardised and reliable access to information, but were concerned about potential constraints to implementation, for example, whether they would have enough time for full discussions, particularly near term.

One of the difficulties with studies based on qualitative data is that participants who agree to take part are more motivated and often older and more educated than women who choose not to participate. The professionals interviewed were particularly concerned that only well-educated women would use any offered decision aids. We don’t know enough about those who do not wish to take up offers of information; it may be because they have already a strong preference for reasons that they feel override any other issues, rather than being less well informed.

Interestingly, the results from the Kingdon study suggest that information giving may not be as important as we thought. While many organisations including NICE suggest that decisions should be made by women themselves based on the best available information, the Kingdon study suggests that many women are in fact happy to rely on the advice of experts. Thus, for some women, the emphasis should perhaps be more on the clinician making the most appropriate decisions for the individual (and being able to explain them to the woman) rather than simply providing the right information to the woman so that she can make her own decisions. By and large, if clinicians are making sure they appreciate individual circumstances and are careful to ensure they are acting in the best interests of those individuals (rather than choosing management that suits the professional or suits society), then probably most women are happy to accept their recommendations. But this should not give clinicians a ‘carte blanche’. Hodnett’s systematic review and Waldenstrom’s Swedish cohort study show that women value health professionals who work with them to make decisions regarding mode of delivery.5,6 Teamwork is the key component of all this.

What can we conclude about best practice for the provision of information to women? First, women want information and providing detailed information about risk in mid-late pregnancy does not increase anxiety. This is notably different to the setting of prenatal diagnosis of fetal abnormalities, where the presentation of specific risk levels is widely believed to increase women’s anxiety. In the context of mode of delivery, information giving increases knowledge, reducing anxiety and decision conflict.

Second, systematic data presentation is beneficial––whether by computerised information giving or through decision aids. Decision aids do not have to be complicated or expensive. Although perhaps ideally suited to a computer programme, many are simply leaflets that guide the individual through the decision-making process step by step. Internet versions are also available and the Ottawa Health Research Institute (decisionaid.ohri.ca) has a database of links to a large selection of decision aids.

But there is much that still needs to be carried out. An ongoing problem with all decision aids is the poor quality of evidence that underlies them. As decision aids are generic, they have to rely on risk estimates and evidence from population studies. Even with the best evidence base of a large multinational randomised study (e.g. delivery of the term breech), the outcome for an individual woman in an individual setting is difficult to predict. The population and healthcare provision arrangements of a trial rarely equate to subsequent circumstances. In other words, information sheets and decision aids are always without the personal, individualised risk assessment that the experienced clinician can provide. Although they can provide the broad brush evidence, there is no system currently available to customise the risk scores for the individual in front of you in clinic. NICE guidelines stress the need for women to be given information regarding benefits and risks specific to them and their pregnancy, but this can only be carried out by an experienced clinician. A major need in this area is for the production of databases that can provide accurate figures on individual risk taking into account the setting and woman’s demographics.

Both the DIAMOND Study and Kingdon’s study add to the evidence base on how women want to make decisions regarding mode of delivery. It is clear that information giving is beneficial in its own right and is appreciated by women. Good quality information using decision aids will improve this. But until valid customised risk scores become available, the most accurate risk for any individual is still likely to be that that comes from the experience of a senior clinician. And Kingdon’s study shows that this continues to be the most appreciated and trusted source of patient information.

References

  1. Top of page
  2. Disclosure of interest
  3. Contribution to authorship
  4. Details of ethics approval
  5. Funding
  6. Acknowledgements
  7. References