Women’s views of optimal risk communication and decision making in general practice consultations about the menopause and hormone replacement therapy

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Abstract

Primary care consultations about the menopause and hormone replacement therapy (HRT) involve decision making in the face of clinical uncertainty. This qualitative study used focus groups and semi-structured interviews with primary care patients to explore patients’ perspectives of optimal risk communication and decision making, and their views on how to improve its effectiveness. The study was set in two general practices in Cambridge, and the participants were 40 women aged between 50 and 55 years, known to be Current-Users (CU), Ex-Users (EU), or Never-Users (NU) of HRT. The majority of participants favoured communication of risks and benefits to facilitate an informed and personalised choice resulting in informed shared decision making, while some wanted a more directive approach. Women felt that risk communication would be optimised by the provision of unbiased, truthful and summarised information, and also by the personalisation of both this risk information and subsequent management of the menopause and treatment with HRT. Barriers to optimal risk communication and decision making included lack of time, GP attitudes and poor communication in the primary care consultation. In summary, consultations concerning the menopause and HRT involve complex decision making in the face of uncertainty, and most patients favour evidence-based, individualised risk information and shared decision making leading to informed choices. Some patients wish for a more directive approach, and practitioners need to develop skills to evaluate each patient’s needs at each consultation.

Introduction

Discussions between patients and general practitioners (GPs) frequently include weighing up the risks and benefits of different treatment options and supporting decisions in the face of uncertainty. Hormone replacement therapy (HRT) has been used for decades, but although data from observational studies suggested several benefits in terms of chronic disease prevention, these have not been fully borne out in recently reported trials. Results have increased concerns about the safety of HRT, and caused consultations about the menopause to become an excellent example of decision making in conditions of growing uncertainty. Managing these uncertainties requires effective communication of risk, and greater attention to be given to the decision making processes in primary care, the ‘neglected second half of the consultation’ [1]. Despite the large medical, public health and social science literature examining decision making and risk communication, the ‘unique opportunity’ the management of risk presents to GPs [2] has received limited attention.

The UK-based Million Women Study demonstrated a duration-dependent increase in the risk of incident and fatal breast cancer that declines after HRT is stopped, and that this effect is greater for combined oestrogen–progestagen preparations than for other types of HRT [3]. Similarly, the US Women’s Health Initiative Randomised Controlled Trial showed that overall health risks exceeded benefits among healthy post-menopausal women after 5 years of combined oestrogen–progestagen preparation use [4]. For the relief of menopausal symptoms, the benefits outweigh the risk for many women, and short term use of HRT remains the treatment of choice. However, the UK Committee on Safety of Medicines recently advised that for longer-term use of HRT, women must be made aware of the increased incidence of breast cancer and discuss these risks in the context of the patient’s short and long term benefits [5]. We have previously reported findings from this study relating to patients’ understanding of risk issues [6] which involve a complex interplay between such acquired knowledge and a woman’s core beliefs about womanhood, fatalism, control and choice. Although it remains uncertain how a patient’s understanding of risk can be used to support their informed choices about HRT, research shows that patients want to be informed of treatment alternatives, and, in general, want to be involved in treatment decisions when more than one treatment alternative exists [7].

Effective communication in health care has been shown to be a powerful tool, not only by helping to establish a relationship with the patient, but also as part of the diagnostic and therapeutic process [8], [9]. A risk is usually described by health professionals as a single number, odds or probability of the occurrence of a negative outcome, but the specific communication of risk is complex. The ‘language of risk’ is fundamental to enabling both doctor and patient reach a shared and full understanding. Calman suggests the need to clarify and standardise the language of risk to improve health professionals’ communication with patients [10]. However, people differ not only in their interpretation of the language of risk, but also in the significance or meaning they give to different outcomes or contexts [6], [11]. Furthermore, the effects of framing of risk information can influence how patients choose treatment options and how they adhere to chosen plans. A recent review examined the effects of interventions addressing risk and risk behaviours [12]. It showed that the most effective risk communication was achieved by the use of individually calculated risk estimates specifically in areas of clinical uncertainty such as blood pressure therapy and HRT. There is little work concerning risk communication in the health care setting, and Bensing et al. have recently suggested that the existing gap between theory and practice could be bridged by a greater emphasis on the context in which the communication takes place [13].

Decision making processes between patients and health professionals have received increasing attention over the last few years, supported by a growing emphasis on patient autonomy [14], the spirit of partnership [15] ‘evidence based patient choice’ [16], and the widespread adoption of evidence-based medicine. Three models of decision making have been described: paternalism, shared decision making and informed choice [17], [18], but Edwards et al. have recently suggested that separating the latter two models may not be justified, as the clinical context may make one model automatically more likely [19]. Shared decision making can be defined as decisions that are shared by doctors and patients, informed by the best evidence available, and weighted from the perspective of the values and characteristics of the patient [20]. Trevena and Barratt have recently argued that ‘integrated decision making’ is a more acceptable name for this new discipline [21]. While decision aids and decision explorers that use interactive technology continue to be developed and evaluated [22], it is also important to gain a greater understanding of patients’ views and preferences to inform this developing area.

The medical care of menopausal women provides a particularly relevant context to study decision making, as such women do not always share views with health professionals on health-related matters [23], and do not attribute the same importance to HRT [24]. Furthermore, they do not feel as informed or involved in treatment decisions as they would wish [25], and the dissemination of recent study findings may have exacerbated these feelings. Findings from this qualitative study of peri-menopausal women from primary care describing patients’ understanding of risk have already been reported [6]. This showed that women engage in an active risk assessment process involving complex interplay between knowledge about the menopause and HRT and their core beliefs, allowing the weighing up of risks and benefits to facilitate an informed decision about HRT. We now report an investigation of their views on risk communication and decision making, using the context of HRT and the menopause. We aimed to examine primary care patients’ perspectives of optimal risk communication and decision making, and their views on how to improve its effectiveness.

Section snippets

Method

A combination of focus groups and semi-structured interviews were used to gain insight into the range of women’s views on risk communication and decision making in general practice consultations about the menopause and HRT. In order to facilitate productive interaction between focus group participants we organised the groups according to women’s HRT experiences. Individual views were then explored in-depth during a small number of interviews conducted by one author (FMW).

Characteristics of participants

Table 1 summarises the characteristics of each group of participants (including interviewees). There were 40 participants, 36 women in six groups, and four in interviews. The majority of participants were married (80%), had children (90%), approximately half worked full-time and only 15% were not employed. Over 80% of participants described themselves as in good or excellent health, and the majority were non-smokers (87.5%), alcohol-users (65%) and regular exercisers (53%). As one might expect,

Discussion and conclusion

This study’s qualitative methodology allows a thorough examination of women’s sophisticated and thoughtful views about risk communication and shared decision making relating to the menopause and HRT in general practice consultations. It capitalises on the interaction within groups to compare individuals’ views, and differences can be interpreted as evidence of a range of views. Although the study used a small sample of women from one city and may not be representative of the larger population

Acknowledgements

We wish to thank all the women who kindly agreed to participate in focus groups and interviews, and the Queen Edith Medical Practice, Cambridge, and East Barnwell Health Centre, Cambridge for providing study patients. This study was carried out as part of FMW’s M.Sc. in General Practice at Guy’s King’s and St. Thomas’ School of Medicine, and was supported by an Enterprise Award from the R&D Directorate, NHS Executive, Eastern Region.

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