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The influence of experiential knowledge and societal perceptions on decision-making regarding non-invasive prenatal testing (NIPT).

ABSTRACT: BACKGROUND:Non-invasive prenatal testing (NIPT) allows women to access genetic information about their fetuses without the physical risk inherent to prior testing methods. The advent of NIPT technology has led to concerns regarding the quality and process of informed consent, as a view of NIPT as "routine" could impair women's considered approach when choosing to undergo testing. Prior studies evaluating NIPT decision-making have focused on the clinical encounter as the primary environment for acquisition of biomedical information and decision formation. While important, this conceptualization fails to consider how additional sources of knowledge, including embodied and empathetic experiential knowledge, shape perceptions of risk and the societal use of NIPT. METHODS:In order to address this issue, qualitative, semi-structured interviews with 25 women who had been offered NIPT were performed. Participants came from a well-resourced, rural setting near a major academic medical center in the US. Women were categorized by NIPT use/non-use as well as whether their described decision-making process was perceived as making a significant decision requiring contemplation ("significant") versus a rapid or immediate decision ("routinized"). A constructivist general inductive approach was used to explore themes in the data, develop a framework of NIPT decision-making, and compare the perceptions of women with differential decision-making processes and outcomes. RESULTS:A framework for decision-making regarding NIPT was developed based on three emergent factors: perceptions of the societal use of NIPT, expected emotional impact of genetic information, and perceived utility of genetic information. Analysis revealed that perceptions of widespread use of NIPT, pervasive societal narratives of NIPT use as "forward-thinking," and a perception of information as anxiety-relieving contributed to routinized uptake of NIPT. In contrast, women who displayed a lack of routinization expressed fewer stereotypes regarding the audience for NIPT and relied on communication with their social networks to consider how they might use the information provided by NIPT. CONCLUSIONS:The findings of this study reveal the societal narratives and perceptions that shape differential decision-making regarding NIPT in the U.S. CONTEXT:Understanding and addressing these perceptions that influence NIPT decision-making, especially routinized uptake of NIPT, is important as the use and scope of this technology increases.

SUBMITTER: Montgomery S

PROVIDER: S-EPMC7574418 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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The influence of experiential knowledge and societal perceptions on decision-making regarding non-invasive prenatal testing (NIPT).

Montgomery Sophie S Thayer Zaneta M ZM

BMC pregnancy and childbirth 20201019 1

<h4>Background</h4>Non-invasive prenatal testing (NIPT) allows women to access genetic information about their fetuses without the physical risk inherent to prior testing methods. The advent of NIPT technology has led to concerns regarding the quality and process of informed consent, as a view of NIPT as "routine" could impair women's considered approach when choosing to undergo testing. Prior studies evaluating NIPT decision-making have focused on the clinical encounter as the primary environme ...[more]

PMID: 33076858

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Project description:ObjectivesThis study aimed to examine how patients perceive shared decision-making regarding CT scan referral and use of the five Choosing Wisely questions with their general practitioner (GP).DesignThis is a qualitative exploratory study using semistructured interviews.SettingThis study was conducted in a large metropolitan public healthcare organisation in urban Australia.ParticipantsFollowing purposive sampling, 20 patients and 2 carers participated. Patient participants aged 18 years or older were eligible if they were attending the healthcare organisation for a CT scan and referred by their GP. Carers/family were eligible to participate when they were in the role of an unpaid carer and were aged 18 years or older. Participants were required to speak English sufficiently to provide informed consent. Participants with cognitive impairment were excluded.FindingsEighteen interviews were conducted with the patient only. Two interviews were conducted with the patient and the patient's carer. Fourteen participants were female. Five themes resulted from the thematic analysis: (1) needing to know, (2) questioning doctors is not necessary, (3) discussing scans is not required, (4) uncertainty about questioning and (5) valuing the Choosing Wisely questions. Participants reported that they presented to their GP with a health problem that they needed to understand and address. Participants accepted their GPs decision to prescribe a CT scan to identify the nature of their problem. They reported ambivalence about engaging in shared decision-making with their doctor, although many participants reported valuing the Choosing Wisely questions.ConclusionsShared decision-making is an important principle underpinning Choosing Wisely. Practice implementation requires understanding patients' motivations to engage in shared decision-making with a focus on attitudes, beliefs, knowledge and emotions. Systems-level support and education for healthcare practitioners in effective communication is important. However, this needs to emphasise communication with patients who have varying degrees of motivation to engage in shared decision-making and Choosing Wisely.

Project description:BackgroundDown syndrome is a common chromosomal abnormality and prenatal screening can inform parents of the risk of their baby having Down syndrome. Little research has examined how decisions regarding both Down syndrome screening as well as diagnosis are made among women who are currently pregnant and how their decisions are influenced by their social contexts, specifically family and social media, using mixed methods. The study was to test the validity and reliability of a scale that measures pregnant women's attitudes and decision-making concerning prenatal Down syndrome screening and diagnosis in urban areas of Taiwan.MethodsWe developed an item pool based on a literature review and in-depth interviews with 30 pregnant women recruited at two district hospitals in urban areas. The item pool was reviewed by a panel of experts and then administered to 300 women who had been pregnant for less than 24 weeks and had not received the Down syndrome screening tests. We used item analysis and exploratory factor analysis to validate the scale and test its reliability.ResultsThe initial item pool had 54 items. After the expert review, three items were deleted. After the item analysis, 16 additional items were deleted. Exploratory factor analysis of the remaining items revealed four factors labeled - "Attitudes towards Down syndrome and Screening Tests," "Important others' Attitudes towards Down Syndrome," "Influence of Important Others on Decision-Making," and "Influence of Social Media on Decision-Making" - and 16 of the remaining items had satisfactory loadings on those factors, explaining 72.0% of the total variance. The Cronbach's α values of the dimensions ranged between 0.75 and 0.90, demonstrating satisfactory internal reliability.ConclusionsThe scale has satisfactory validity and reliability, and can be used to understand pregnant women's attitudes and decision-making regarding Down syndrome screening and diagnosis, and to help design tailored consultations for pregnant women in clinical settings.

Project description:BackgroundGenomics-based noninvasive prenatal tests (NIPT) allow screening for chromosomal anomalies such as Down syndrome (trisomy 21). The technique uses cell-free fetal DNA (cffDNA) that circulates in the maternal blood and is detectable from 5 weeks of gestation onwards. Parents who choose to undergo this relatively new test (introduced in 2011) might be aware of its positive features (i.e. clinical safety and ease of use); however, they might be less aware of the required decisions and accompanying internal conflicts following a potential positive test result. To show the evidence on psychological and social consequences of the use of NIPT, we conducted a scoping review.MethodsWe systematically searched four electronic databases (MEDLINE (Ovid), Cochrane Library (Wiley), CINAHL (EBSCO) and PsychINFO (EBSCO)) for studies that investigated the psychological or social consequences of the use of NIPT by pregnant women or expecting parents. The search was limited to studies published between 2011 and August 8, 2018. We identified 2488 studies and, after removal of duplicates, screened 2007 titles and abstracts, and then assessed 99 articles in full text (both screenings were done independently in duplicate). We included 7 studies in our analysis.ResultsFive studies assessed anxiety, psychological distress and/or decisional regret among women with validated psychological tests like the Spielberger State Trait-Anxiety Inventory (STAI), the Pregnancy-Related Anxiety Questionnaire-Revised (PRAQ-R), the Kessler Psychological Distress Scale (K6) or the Decisional Regret Scale (DRS). Two studies assessed women's experiences with and feelings after NIPT in interviews or focus groups. The included studies were heterogeneous in location, study setting, inclusion criteria, outcome assessment, and other characteristics.ConclusionsOnly few studies on psychological consequences of NIPT have been identified. The studies assessed only short-term psychological consequences of NIPT at baseline and/or after receiving the results or after giving birth. Studies show that short term anxiety decreased when women received negative NIPT results and that decisional regret was generally low. We could not identify studies on long term consequences of NIPT, as well as studies on women's partners' short and long term outcomes, nor on social consequences of NIPT.

Project description:RATIONALE:Patient participation in medical decision-making is widely advocated, but outcomes are inconsistent. OBJECTIVES:We examined the associations between medical decision-making roles, and patients' perceptions of their care and knowledge while undergoing pulmonary nodule surveillance. METHODS:The study setting was an academically affiliated Veterans Affairs hospital network in which 121 participants had 319 decision-making encounters. The Control Preferences Scale was used to assess patients' decision-making roles. Associations between decision-making, including role concordance (i.e., agreement between patients' preferred and actual roles), shared decision-making (SDM), and perceptions of care and knowledge, were assessed using logistic regression and generalized estimating equations. RESULTS:Participants had a preferred role in 98% of encounters, and most desired an active role (shared or patient controlled). For some encounters (36%), patients did not report their actual decision-making role, because they did not know what their role was. Role concordance and SDM occurred in 56% and 26% of encounters, respectively. Role concordance was associated with greater satisfaction with medical care (adjusted odds ratio [Adj-OR], 5.39; 95% confidence interval [CI], 1.68-17.26), higher quality of patient-reported care (Adj-OR, 2.86; 95% CI, 1.31-6.27), and more disagreement that care could be better (Adj-OR, 2.16; 95% CI, 1.12-4.16). Role concordance was not associated with improved pulmonary nodule knowledge with respect to lung cancer risk (Adj-OR, 1.12; 95% CI, 0.63-2.00) or nodule information received (Adj-OR, 1.13; 95% CI, 0.31-4.13). SDM was not associated with perceptions of care or knowledge. CONCLUSIONS:Among patients undergoing longitudinal nodule surveillance, a majority had a preference for having active roles in decision-making. Interestingly, during some encounters, patients did not know what their role was or that a decision was being made. Role concordance was associated with greater patient-reported satisfaction and quality of medical care, but not with improved knowledge. Patient participation in decision-making may influence perceptions of care; however, clinicians may need to focus on other communication strategies or domains to improve patient knowledge and health outcomes.

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The influence of experiential knowledge and societal perceptions on decision-making regarding non-invasive prenatal testing (NIPT).

Publications

The influence of experiential knowledge and societal perceptions on decision-making regarding non-invasive prenatal testing (NIPT).

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