Interventions to improve risk communication in clinical genetics: Systematic review

Edwards, Adrian; Gray, Jonathon; Clarke, Angus; Dundon, Joanna; Elwyn, Glyn; Gaff, Clara; Hood, Kerenza; Iredale, Rachel; Sivell, Stephanie; Shaw, Christine; Thornton, Hazel

doi:10.1016/j.pec.2007.11.026

Cited by 114 publications

(95 citation statements)

References 75 publications

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“…These scales were based on previous research, where factors related to intended participation in PCS for cystic fibrosis were studied. 24 Perceived severity was measured with four items on a 5-point scale (4)(5)(6)(7)(8)(9)(10)(11)(12)(13)(14)(15)(16)(17)(18)(19)(20). Respondents were asked how disturbing it would be to have a child with either severe pain, severe physical disability or severe intellectual disability, or who would die at a young age.…”

Section: Groupmentioning

confidence: 99%

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Expanded carrier screening: what determines intended participation and can this be influenced by message framing and narrative information?

et al. 2017

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Next-generation sequencing enabled us to create a population-based expanded carrier screening (ECS) test that simultaneously tests for 50 serious autosomal recessive diseases. Before offering this test universally, we wanted to know what factors are related to intended participation and how the general public can be informed about the test without being influenced in their intention to participate. We studied this by measuring to what extent 'message framing' and 'narrative information' can influence people's intended participation. Data were collected by means of an online survey of 504 potential users, and the factors examined were based on the Theory of Planned Behaviour and on previous research on intended participation in preconception carrier screening. Message framing was manipulated by explaining the risk of couple carriership in different ways, while narrative information was provided to only half of the respondents. The factors most positively related to intended participation were perceiving benefits of the screening, having a positive attitude towards the screening, having no religion, having an actual child wish and experiencing the choice to participate as easy. Perceived benefits and a positive attitude were most influential factors by far. Message framing and narrative information had no significant effect on intended participation, reinforcing that message framing and narrative information can help to inform the general public about ECS without influencing their intended participation. Future research should study if the importance of perceived benefits and a positive attitude can be replicated when other factors are included and when actual participation is measured instead of intended participation. European Journal of Human Genetics (2017) 25, 793-800; doi:10.1038/ejhg.2017.74; published online 3 May 2017 INTRODUCTION Approximately 1-2 in 100 couples are at risk of having a child affected with a recessive genetic condition. 1 Population based expanded carrier screening (ECS) makes it possible to test couples before pregnancy for relevant recessive genetic conditions simultaneously. The preconception period might be considered a better time than the prenatal period, because it results in more reproductive options being available and termination of pregnancy can be avoided. 2 Next-generation sequencing techniques enabled us to create such a population-based ECS test that simultaneously tests for 50 serious autosomal recessive diseases. 3 The composition of this panel was based on previous research, multidisciplinary discussions and stakeholder meetings. Screening results are couple-based, so only couples who are both carriers of the same disease get positive results. However, before this test can be offered in a public healthcare setting, we needed a better understanding of the factors driving intended participation and how the general public could be better informed-but not influenced -in their intention to participate. This information is important because it is clear from previous research a...

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Section: Groupmentioning

confidence: 99%

“…This information is important because it is clear from previous research and clinical practice that risk information is difficult to understand and people may interpret it differently. [4][5][6][7] The factors that we examine are based on the Theory of Planned Behaviour (TPB), on previous research on intended participation in …”

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confidence: 99%

Expanded carrier screening: what determines intended participation and can this be influenced by message framing and narrative information?

et al. 2017

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“…Although most studies investigating the outcomes of genetic counseling have focused on clients' recall of information, accuracy of risk perception, and knowledge and understanding of medical concepts conveyed (Kessler & Antley 1981;Meiser et al 2008), the most important and impactful outcomes of genetic counseling from clients' perspectives are often of a psychosocial nature-for example, healthy adjustment, empowerment, behavioral change, and satisfaction with decision-related outcomes (Edwards et al 2008). These outcomes are associated with a counseling model approach to genetic counseling.…”

Section: Defining Psychotherapy and Its Relationship To The Disciplinmentioning

confidence: 99%

Conceptualizing Genetic Counseling as Psychotherapy in the Era of Genomic Medicine

Austin

Semaka

Hadjipavlou

2014

Journal of Genetic Counseling

115

105

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Discussions about genetic contributions to medical illness have become increasingly commonplace. Physicians and other health-care providers in all quarters of medicine, from oncology to psychiatry, routinely field questions about the genetic basis of the medical conditions they treat. Communication about genetic testing and risk also enter into these conversations, as knowledge about genetics is increasingly expected of all medical specialists. Attendant to this evolving medical landscape is some uncertainty regarding the future of the genetic counseling profession, with the potential for both increases and decreases in demand for genetic counselors being possible outcomes. This emerging uncertainty provides the opportunity to explicitly conceptualize the potentially distinct value and contributions of the genetic counselor over and above education about genetics and risk that may be provided by other health professionals.In this paper we suggest conceptualizing genetic counseling as a highly circumscribed form of psychotherapy in which effective communication of genetic information is a central therapeutic goal. While such an approach is by no means new-in 1979 Seymour Kessler explicitly described genetic counseling as a "kind of psychotherapeutic encounter," an "interaction with a psychotherapeutic potential"-we expand on his view, and provide research evidence in support of our position. We review available evidence from process and outcome studies showing that genetic counseling is a therapeutic encounter that cannot be reduced to one where the counselor performs a simple "conduit for information" function, without losing effectiveness. We then discuss potential barriers that may have impeded greater uptake of a psychotherapeutic model of practice, and close by discussing implications for practice.

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“…4,[8][9][10] However, there is still no consensus on how to present individualized risk information to consulting patients. 6,11,12 Thus, identifying a strategy that would optimize the transmission of risk information by health professionals and enhance understanding of individual breast cancer risk remains a considerable challenge. To the best of our knowledge, no study has yet assessed the most effective strategies to communicate probabilities obtained from currently available breast cancer risk prediction models.…”

Section: Introductionmentioning

confidence: 99%

A focus group study on breast cancer risk presentation: one format does not fit all

et al. 2012

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Identifying a strategy that would optimize both the communication and understanding of the individual breast cancer risk remains a considerable challenge. This study explored the preferences of women with a family history of breast cancer about six presentation formats of individual breast cancer risk, as calculated from a risk prediction model. Thirty-four unaffected women attending genetic counseling because of a family history of breast cancer participated in six focus groups conducted in Qué bec City (2), Montré al (2) and Toronto (2), Canada. Six risk formats were presented for a fictitious case involving a 35-year-old woman (1-numerical: cumulative risk probabilities by age until 80 years; 2-risk curves: probabilities expressed in a risk curve that also provided a risk curve for a woman with no family history in first-degree relatives; 3-relative risk of breast cancer by age 80 years; 4 and 5-absolute risk of breast cancer and absolute chance of not developing breast cancer in the next 20 years; 6-qualitative: color-coded figure). Participants were asked to indicate their appreciation of each format. A group discussion followed during which participants commented on each format. The most and least appreciated formats were risk curves and relative risk, respectively. Overall, participants advocated the use of formats that combine quantitative, qualitative and visual features. Using a combination of approaches to communicate individual breast cancer risks could be associated with higher satisfaction of counselees. Given the increasing use of risk prediction models, it may be relevant to consider the preferences of both the counselee and the professional.

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Interventions to improve risk communication in clinical genetics: Systematic review

Cited by 114 publications

References 75 publications

Expanded carrier screening: what determines intended participation and can this be influenced by message framing and narrative information?

Expanded carrier screening: what determines intended participation and can this be influenced by message framing and narrative information?

Conceptualizing Genetic Counseling as Psychotherapy in the Era of Genomic Medicine

A focus group study on breast cancer risk presentation: one format does not fit all

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