ReviewInterventions to improve risk communication in clinical genetics: Systematic review
Introduction
Risk communication concerns the sharing and discussion of information about the harms and benefits of different options in health and health care. Ahl et al. defined it as: “the open two-way exchange of information and opinion about risk, leading to better understanding and better (clinical) decisions” [1]. It has become increasingly important in health care discourse as the emphasis has shifted away from the paternalistic paradigm towards one of greater patient participation and responsibility for health and health care decisions. In practice this has been operationalised in the ‘shared decision making’ or the ‘informed choice’ models of decision-making [2], [3]. Risk communication is a prominent part of discussions between professionals and users in clinical genetics and it is important to identify the most effective strategies for communication about the risks involved.
Elements where notions of risk are particularly prominent in clinical genetics range from personal health risk (including predictive testing) and health-related behaviour and risk management to diagnostic and explanatory work (e.g. dysmorphology) and reproductive issues and decisions. Further specific issues arise in clinical genetics including inter alia risks that apply across families involving more than a single individual and couple, strained relationships with family arising from (non-) disclosure issues, survivor guilt, fears of discrimination in employment or insurance, and dilemmas in reproductive choice and issues that may arise due to the urgency of the information, for example during critical periods in pregnancy. Genetic risk information may also have the potential to weaken an individual's motivation for health behaviour, perhaps because of a feeling of inevitability associated with genetic risk factors, or perceived loss of control to change outcomes [4], [5].
The process of risk communication is encompassed within the activity of genetic counselling [6]. Genetic counselling interventions have been reviewed by several authors [7], [8], [9], [10], but these reviews focus on familial cancer or other specific clinical areas, not the range that is currently encountered and also researched in clinical genetics. Within the narrow spheres of those pieces of research, the number of studies providing data to the reviews is small (e.g. mostly 2 or 3 per outcome [7]). This may be at least part of the reason that the reviews found differing conclusions—one finding reduction in general anxiety and improved accuracy of perceived risks [9] and another finding no effect on perceived risk or anxiety [7]. Importantly, these other reviews have focused on areas where there has usually been a research focus, some of them single gene disorder areas. These have been the mainstay of clinical genetics workload to date, but the clinical genetics workload is changing now to include more conditions characterised by multiple gene inheritance and perhaps more gene–environment interaction where genetic risk may be only one of a range of risk factors (e.g. ischaemic heart disease) [11]. There are still a number of uncertainties in the literature, including the impacts of risk perception and the effects of risk communication interventions within the broader area of genetic counselling.
Given the importance of risk and risk communication in clinical genetics it is important to identify the most effective strategies for risk communication, both at an individual level and for communication with families. This is important in the context of the widening brief of clinical genetics, the likely breadth of clinicians involved in clinical genetics work (i.e. encompassing particularly general practitioners in the future) and the increasing availability of risk assessment methods. In the future both primary and secondary care clinicians will increasingly be challenged to identify patients whose symptoms, physical findings, or family history raise issues of genetics (or genetic risk assessment). They will need to discuss the pros and cons of testing, and to determine how to use genetic information most effectively to improve disease prevention. Also, as patients become more informed about potential tests and treatments and more empowered to seek them out, clinicians will need to respond effectively to this demand.
We undertook a systematic review of interventions to improve risk communication in the clinical genetics field. We sought to describe the types of interventions that have been developed to enhance risk communication in the clinical genetics context and their effectiveness on key outcomes: knowledge; decision-making process; management of anxiety; change in intentions to take or decline tests; actual test decisions. Within this we also examined evidence of whether interventions based on individualised risk information achieve or enhance risk-reducing behaviour change.
Section snippets
Search strategy
Searching of six electronic databases (from 1985 to January 2006) was undertaken. These were: Medline, CINAHL, Cochrane Library, EMBASE, PsycInfo, National Research Register. The search strategy was based around those used in our other systematic reviews in related fields [12], [13] with layers of headings around:
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risk and communication;
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genetics, predisposition, screening, or counselling;
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service delivery, health services, organisation;
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trial design filters.
Follow-up searches included both
Results
Twenty-eight studies were included in this Review. It comprises Section ‘D’ of the overall review, and numbers of studies searched, included and processed for data extraction in the whole review are shown in Fig. 1. The other sections are reported elsewhere [14]: section A, studies on construction of risk; section B, risk perception; C, family communication; E, training professionals.
We summarise the 28 studies in Table 1 (see end of paper). We also present a narrative synthesis of their
Principal findings
This review identified 28 studies describing or evaluating risk communication elements rather than genetic counselling more widely. Most of the research in this area has addressed risk communication about cancer (mainly breast and/or ovarian cancer) susceptibility. Risk communication is an important issue, and one for which there is user demand [57] and much initiative from service providers and researchers to enhance existing communication approaches. Risk communication interventions achieve
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