Evaluation of preferences of women and healthcare professionals in Singapore for implementation of noninvasive prenatal testing for Down syndrome

Barrett, Angela N.; Advani, Henna V.; Chitty, Lyn S.; Su, Lin; Biswas, Arijit; Tan, Wei Ching; Hill, Melissa; Choolani, Mahesh

doi:10.11622/smedj.2016114

Cited by 17 publications

(35 citation statements)

References 49 publications

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“…In the United States, the majority of insurance companies fund NIPT for high-risk pregnancies, though several have expanded their coverage to all pregnant women [10]. In some jurisdictions such as Hong Kong and Singapore, NIPT is available only through a private-pay system [16, 17]. In Europe, Denmark, France, the Netherlands, and Switzerland offer public funding for NIPT, contingent with risk [18].…”

Section: Introductionmentioning

confidence: 99%

Facilitating informed choice about non-invasive prenatal testing (NIPT): a systematic review and qualitative meta-synthesis of women’s experiences

Cernat

Freitas

Majid

et al. 2019

BMC Pregnancy Childbirth

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BackgroundNon-invasive prenatal testing (NIPT) can be used to accurately detect fetal chromosomal anomalies early in pregnancy by assessing cell-free fetal DNA present in maternal blood. The rapid diffusion of NIPT, as well as the ease and simplicity of the test raises concerns around informed decision-making and the potential for routinization. Introducing NIPT in a way that facilitates informed and autonomous decisions is imperative to the ethical application of this technology. We approach this imperative by systematically reviewing and synthesizing primary qualitative research on women’s experiences with and preferences for informed decision-making around NIPT.MethodsWe searched multiple bibliographic databases including Ovid MEDLINE, EBSCO Cumulative Index to Nursing & Allied Health Literature (CINAHL), and ISI Web of Science Social Sciences Citation Index (SSCI). Our review was guided by integrative qualitative meta-synthesis, and we used a staged coding process similar to that of grounded theory to conduct our analysis.ResultsThirty empirical primary qualitative research studies were eligible for inclusion. Women preferred to learn about NIPT from their clinicians, but they expressed dissatisfaction with the quality and quantity of information provided during counselling and often sought information from a variety of other sources. Women generally had a good understanding of test characteristics, and the factors of accuracy, physical risk, and test timing were the critical information elements that they used to make informed decisions around NIPT. Women often described NIPT as easy or just another blood test, highlighting threats to informed decision-making such as routinization or a pressure to test.ConclusionsWomen’s unique circumstances modulate the information that they value and require most in the context of making an informed decision. Widened availability of trustworthy information about NIPT as well as careful attention to the facilitation of counselling may help facilitate informed decision-making.Trial registrationPROSPERO 2018 CRD42018086261.Electronic supplementary materialThe online version of this article (10.1186/s12884-018-2168-4) contains supplementary material, which is available to authorized users.

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Section: Introductionmentioning

confidence: 99%

Facilitating informed choice about non-invasive prenatal testing (NIPT): a systematic review and qualitative meta-synthesis of women’s experiences

Cernat

Freitas

Majid

et al. 2019

BMC Pregnancy Childbirth

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“…The majority of DCEs were conducted in Europe ( n = 12; 63%). One study was conducted in the US [38], one in Canada [36], one in Australia [41], one in Singapore [42] and one in China and Hong Kong [43]. Two studies (11%) compared preferences across multiple countries: Hill et al, (2015) who compared the preferences of people in Canada, Denmark, Iceland, Israel, Italy, the Netherlands, Portugal, Singapore, and UK; and Lewis et al, (2006) who compared preferences from the UK and Australia.…”

Section: Resultsmentioning

confidence: 99%

“…‘Health care professionals’ referred to obstetricians, gynaecologists, nurses, midwives, sonographers or, sometimes, as simply ‘other’ with no clarification in the manuscript. Ten studies (56%) compared preferences across different samples [41, 42, 44–51]. Table 1 summaries key data extracted from the included studies.…”

Section: Resultsmentioning

confidence: 99%

Preferences for aspects of antenatal and newborn screening: a systematic review

Vass

Georgsson

Ulph

et al. 2019

BMC Pregnancy Childbirth

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Background Many countries offer screening programmes to unborn and newborn babies (antenatal and newborn screening) to identify those at risk of certain conditions to aid earlier diagnosis and treatment. Technological advances have stimulated the development of screening programmes to include more conditions, subsequently changing the information required and potential benefit-risk trade-offs driving participation. Quantifying preferences for screening programmes can provide programme commissioners with data to understand potential demand, the drivers of this demand, information provision required to support the programmes and the extent to which preferences differ in a population. This study aimed to identify published studies eliciting preferences for antenatal and newborn screening programmes and provide an overview of key methods and findings. Methods A systematic search of electronic databases for key terms identified eligible studies (discrete choice experiments (DCEs) or best-worst scaling (BWS) studies related to antenatal/newborn testing/screening published between 1990 and October 2018). Data were systematically extracted, tabulated and summarised in a narrative review. Results A total of 19 studies using a DCE or BWS to elicit preferences for antenatal ( n = 15; 79%) and newborn screening ( n = 4; 21%) programmes were identified. Most of the studies were conducted in Europe ( n = 12; 63%) but there were some examples from North America ( n = 2; 11%) and Australia ( n = 2; 11%). Attributes most commonly included were accuracy of screening ( n = 15; 79%) and when screening occurred ( n = 13; 68%). Other commonly occurring attributes included information content ( n = 11; 58%) and risk of miscarriage ( n = 10; 53%). Pregnant women ( n = 11; 58%) and healthcare professionals ( n = 11; 58%) were the most common study samples. Ten studies (53%) compared preferences across different respondents. Two studies (11%) made comparisons between countries. The most popular analytical model was a standard conditional logit model ( n = 11; 58%) and one study investigated preference heterogeneity with latent class analysis. Conclusion There is an existing literature identifying stated preferences for antenatal and newborn screening but the incorporation of more sophisticated design and analytical methods to investigate preference heterogeneity could extend the relevance of the findings to inform commissioning of new screening programmes.

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“…Variability in women's information needs was further supported by (a) women's responses indicating additional important information for decision-making about NIPT and (b) the low level of consensus overall regarding the most highly valued information items (i.e., that the most highly valued information items were endorsed by less than 25% of women). Ideally, health professionals will assume a personalized rather than Bone size fits all^approach to information provision (Barrett et al 2016;Sachs et al 2015) which can be achieved by exploring with each woman what she feels is important to know. While certain information should be discussed for medico-legal reasons and based on clinical judgment, health professionals can tailor the discussion by elaborating on topics of higher personal value and minimizing topics judged, by the woman, to be less relevant.…”

Section: Practice Implicationsmentioning

confidence: 99%

Talking Points: Women's Information Needs for Informed Decision‐Making About Noninvasive Prenatal Testing for Down Syndrome

Dane

Peterson

Miller

2018

Journal of Genetic Counseling

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Adequate knowledge is a vital component of informed decision-making; however, we do not know what information women value when making decisions about noninvasive prenatal testing (NIPT). The current study aimed to identify women's information needs for decision-making about NIPT as a first-tier, non-contingent test with out-of-pocket expense and, in turn, inform best practice by specifying the information that should be prioritized when providing pre-test counseling to women in a time-limited scenario or space-limited decision support tool. We asked women (N = 242) in Australia to indicate the importance of knowing 24 information items when making a decision about NIPT and to choose two information items they would most value. Our findings suggest that women value having complete information when making decisions about NIPT. Information about the accuracy of NIPT and the pros and cons of NIPT compared to other screening and invasive tests were perceived to be most important. The findings of this study can be used to maximize the usefulness of time-limited discussions or space-limited decision support tools, but should not be routinely relied upon as a replacement for provision of full and tailored information when feasible.

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Evaluation of preferences of women and healthcare professionals in Singapore for implementation of noninvasive prenatal testing for Down syndrome

Cited by 17 publications

References 49 publications

Facilitating informed choice about non-invasive prenatal testing (NIPT): a systematic review and qualitative meta-synthesis of women’s experiences

Facilitating informed choice about non-invasive prenatal testing (NIPT): a systematic review and qualitative meta-synthesis of women’s experiences

Preferences for aspects of antenatal and newborn screening: a systematic review

Talking Points: Women's Information Needs for Informed Decision‐Making About Noninvasive Prenatal Testing for Down Syndrome

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