Communicating Down syndrome risk according to maternal age: “1-in-<i>X</i>
” effect on perceived risk

Pighin, Stefania; Savadori, Lucia; Barilli, Elisa; Galbiati, Silvia; Smid, Maddalene; Ferrari, Maurizio; Cremonesi, Laura

doi:10.1002/pd.4606

Cited by 18 publications

(16 citation statements)

References 13 publications

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“…The expected age-specific rate in each age group was calculated according to the selected model. All rates in this study were reported in the format of “number of cases per 1,000” as previously recommended [3]. …”

Section: Methodsmentioning

confidence: 99%

Maternal Age-Specific Rates for Trisomy 21 and Common Autosomal Trisomies in Fetuses from a Single Diagnostic Center in Thailand

et al. 2016

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To provide maternal age-specific rates for trisomy 21 (T21) and common autosomal trisomies (including trisomies 21, 18 and 13) in fetuses. We retrospectively reviewed prenatal cytogenetic results obtained between 1990 and 2009 in Songklanagarind Hospital, a university teaching hospital, in southern Thailand. Maternal age-specific rates of T21 and common autosomal trisomies were established using different regression models, from which only the fittest models were used for the study. A total of 17,819 records were included in the statistical analysis. The fittest models for predicting rates of T21 and common autosomal trisomies were regression models with 2 parameters (Age and Age2). The rate of T21 ranged between 2.67 per 1,000 fetuses at the age of 34 and 71.06 per 1,000 at the age of 48. The rate of common autosomal trisomies ranged between 4.54 per 1,000 and 99.65 per 1,000 at the same ages. This report provides the first maternal age-specific rates for T21 and common autosomal trisomies fetuses in a Southeast Asian population and the largest case number of fetuses have ever been reported in Asians.

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Section: Methodsmentioning

confidence: 99%

Maternal Age-Specific Rates for Trisomy 21 and Common Autosomal Trisomies in Fetuses from a Single Diagnostic Center in Thailand

et al. 2016

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“…A common format for risks is "1 in X," which the preceding argument suggests should tend to make risks look smaller than, say, "10 out of 10X." This format has been strongly criticized (Zikmund-Fisher 2014), although a recent review argued that this effect is smaller than claimed (Sirota et al 2014), and a recent study found that "1 in X " can even be seen as suggesting higher risks than when expressed with a higher numerator (Pighin et al 2015), particularly for participants with low educational level. Table 1 illustrates a range of comparative measures applied to the example described in the sidebar Is Bacon as Dangerous as Cigarettes?…”

Section: Chances As Fractionsmentioning

confidence: 99%

Risk and Uncertainty Communication

Spiegelhalter

2017

Annu. Rev. Stat. Appl.

172

147

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This review briefly examines the vast range of techniques used to communicate risk assessments arising from statistical analysis. After discussing essential psychological and sociological issues, I focus on individual health risks and relevant research on communicating numbers, verbal expressions, graphics, and conveying deeper uncertainty. I then consider practice in a selection of diverse case studies, including gambling, the benefits and risks of pharmaceuticals, weather forecasting, natural hazards, climate change, environmental exposures, security and intelligence, industrial reliability, and catastrophic national and global risks. There are some tentative final conclusions, but the primary message is to acknowledge expert guidance, be clear about objectives, and work closely with intended audiences. 31

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“…In addition, a recent study showed that 80% of the participating UK family physicians systematically preferred to communicate prenatal risk using ‘1‐in‐X’ ratios . However, pregnant women who received Down syndrome risk information using this information format perceived that they are at higher risk compared with women who received the same information as a proportion of 1000 . Overall, there is decisive evidence that 1‐in‐X ratios lead to greater perceived probability and worry, compared with other formats such as percentages or ratios out of 100, which tend to result in more homogeneous perceptions .…”

Section: Avoid Using the 1‐in‐x Format To Describe The Riskmentioning

confidence: 83%

“…This suggests that a substantial proportion of women will not be able to make sense of risk communications about Down syndrome. For instance, after receiving information about the risk of having a child with Down syndrome, only 30–40% of women correctly indicated their chances of not having a child with Down syndrome . In addition, patients (and even medical professionals) have serious difficulties inferring the positive predictive value of tests from information about the prevalence of a disease and the sensitivity and false‐positive rate of the test .…”

Section: Why Is Careful Risk Communication Needed?mentioning

confidence: 99%

Can we improve risk communication about non‐invasive prenatal testing?

Petrova

García‐Retamero

2017

BJOG

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Diagnostic information from prenatal screening for Down syndrome can help families prepare for the birth of a child with special needs or help them decide whether they want to continue with the pregnancy. Currently in the UK women are offered the combined screening test (a blood test and an ultrasound) that categorises them into 'higher risk' or 'lower risk' groups (see www.nhs.uk). Women at higher risk are offered a diagnostic test, such as amniocentesis or chorionic villus sampling (CVS). These diagnostic tests are invasive and carry a 0.5-1% risk of miscarriage.In addition to these tests, non-invasive prenatal testing (NIPT)currently only available privatelywill soon be introduced into the screening program. 1,2 NIPT is conducted using a blood test and it is more sensitive and more specific than other screening tests. In addition, NIPT can be offered earlier in the pregnancy and allows some patients to avoid the risks of diagnostic testing. Analyses indicate that the implementation of NIPT as a contingent test (i.e. offered to women who receive a higher-risk result from the combined test) will improve the quality of care. 1 However, even with improved tests, the ethical imperative for informed patient decision-making remains. Despite its better efficiency, NIPT is not 100% accurate, and some women may still choose to confirm the results using the invasive tests.Providers of screening tests and programs usually make an effort and provide information to help women make decisions. Women are expected to make informed decisions regarding whether to get screened, what tests to undergo, and how to proceed with their pregnancy given the test results. An informed decision about prenatal screening means that the decision-maker has obtained sufficient knowledge, deliberated carefully about the available options, and made a final choice that is consistent with her (and her partner's) values. 3 Here we would like to draw attention to one specific and essential aspect of this decision-making process: the comprehension of risk communications.When it comes to potential risks and benefits of procedures, informed decisions are meant to be evidence-based. This means that women should receive risk information and it is of interest that their comprehension of this information is facilitated rather than obscured. Common risk communications regarding prenatal screening include the risk of having a baby with Down syndrome, the chance of getting a false positive test, or the chance of a miscarriage in the case of invasive testing. A recent analysis of decision aids for Down syndrome prenatal testing located only one decision aid that addressed NIPT. 4 This number will most definitely increase, as will the frequency of patient-provider interactions in which the advantages and disadvantages of NIPT are discussed. With this in mind, we wanted to offer several timely, evidence-based recommendations regarding how to communicate risk and numerical information to women considering NIPT.

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Communicating Down syndrome risk according to maternal age: “1-in-X ” effect on perceived risk

Abstract: The present findings corroborate the existence of the 1-in-X effect in a real-world setting, showing that, in pregnant women, the 1-in-X format actually elicits a higher perceived risk of Down syndrome, compared with the N-in-NX format.

Cited by 18 publications

References 13 publications

Maternal Age-Specific Rates for Trisomy 21 and Common Autosomal Trisomies in Fetuses from a Single Diagnostic Center in Thailand

Maternal Age-Specific Rates for Trisomy 21 and Common Autosomal Trisomies in Fetuses from a Single Diagnostic Center in Thailand

Risk and Uncertainty Communication

Can we improve risk communication about non‐invasive prenatal testing?

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