Barriers in using cardiometabolic risk information among consumers with low health literacy

Damman, Olga C.; Bogaerts, Nina M. M.; Dongen, Diana van; Timmermans, Daniëlle R. M.

doi:10.1111/bjhp.12149

Cited by 16 publications

(30 citation statements)

References 72 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 some risk formats (eg natural frequencies and some graphical formats in addition to numerical information) in general seem to evoke better risk understanding than other formats (eg percentages only), it remains unclear how the provided risk information supports an individual's understanding of their risk. Previous user tests have shown that risks presented as percentages in risk calculators often have unclear or ambiguous meaning for end‐users, even when accompanied by graphical information . Other more general problems revealed by such user tests are that the risk message does not necessarily match the individual's existing beliefs and expectations about risk factors, and that, perhaps partly as a result of this, many end‐users with relatively high risks tend to undervalue or normalize their risk .…”

Section: Introductionmentioning

confidence: 99%

“…Previous user tests have shown that risks presented as percentages in risk calculators often have unclear or ambiguous meaning for end‐users, even when accompanied by graphical information . Other more general problems revealed by such user tests are that the risk message does not necessarily match the individual's existing beliefs and expectations about risk factors, and that, perhaps partly as a result of this, many end‐users with relatively high risks tend to undervalue or normalize their risk . Such problems are particularly urgent as many people, not only those with lower educational levels, have poor health literacy and numeracy skills, thereby placing them at a higher risk of misinterpreting information and making non‐informed decisions .…”

Section: Introductionmentioning

confidence: 99%

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How lay people understand and make sense of personalized disease risk information

Damman¹,

Bogaerts²,

Haak³

et al. 2017

Health Expectations

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BackgroundDisease risk calculators are increasingly web‐based, but previous studies have shown that risk information often poses problems for lay users.ObjectiveTo examine how lay people understand the result derived from an online cardiometabolic risk calculator.DesignA qualitative study was performed, using the risk calculator in the Dutch National Prevention Program for cardiometabolic diseases. The study consisted of three parts: (i) attention: completion of the risk calculator while an eye tracker registered eye movements; (ii) recall: completion of a recall task; and (iii) interpretation: participation in a semi‐structured interview.Setting and participantsWe recruited people from the target population through an advertisement in a local newspaper; 16 people participated in the study, which took place in our university laboratory.ResultsEye‐tracking data showed that participants looked most extensively at numerical risk information. Percentages were recalled well, whereas natural frequencies and verbal labels were remembered less well. Five qualitative themes were derived from the interview data: (i) numerical information does not really sink in; (ii) the verbal categorical label made no real impact on people; (iii) people relied heavily on existing knowledge and beliefs; (iv) people zoomed in on risk factors, especially family history of diseases; and (v) people often compared their situation to that of their peers.Discussion and conclusionAlthough people paid attention to and recalled the risk information to a certain extent, they seemed to have difficulty in properly using this information for interpreting their risk.

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Verbal Descriptions Accompanying Numeric Information About the Risk: The Valence of Message and Linguistic Polarity

Olchowska-Kotala

2019

J Psycholinguist Res

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The aim of this study was to investigate the effect of presenting risk on decision making and evaluations with regard to the valence (positive vs. negative) and the linguistic polarity (direct vs. indirect). Participants were presented with a message in which patients were informed about risk associated with some diagnostic medical procedures. In the presented text, before obtaining statistical information about risk (e.g., 1 in 1000), four types of the verbal descriptions were used (risk is high/risk is not low/risk is low/risk is not high). The valence of information influenced the decision and respondent’s evaluation. Participants receiving a verbal description with a positive valence were more positive about the patient’ decision, and more positively evaluated the doctor and patient’s mood than participants receiving a description with a negative valence. Neither main nor interaction effects with linguistic polarity were found. The research does not support that indirect wording mitigates the meaning of a message on risk and highlights the strength and persistence of relying on the verbal description, particularly their affective valence.

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Barriers in using cardiometabolic risk information among consumers with low health literacy

Cited by 16 publications

References 72 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?

How lay people understand and make sense of personalized disease risk information

Verbal Descriptions Accompanying Numeric Information About the Risk: The Valence of Message and Linguistic Polarity

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