The use of noninvasive prenatal testing in obstetric care: educational resources, practice patterns, and barriers reported by a national sample of clinicians

Farrell, Ruth M.; Agatisa, Patricia K.; Mercer, Mary Beth; Mitchum, Ariane; Coleridge, Marissa

doi:10.1002/pd.4812

Cited by 44 publications

(36 citation statements)

References 38 publications

(71 reference statements)

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“…These findings are consistent with another recent study that found counselling and education resources about cfDNA screening are not being offered as often as the screen itself is offered, in spite of professional society guidelines to the contrary [39]. Indeed, in a recent survey, more than 80% of practicing obstetric care providers reported lack of time as a barrier to counseling patients about cfDNA screening [22]. …”

Section: Discussionsupporting

confidence: 88%

“…This small sample size is ultimately composed of providers who were willing to participant and discuss their experiences, which may have resulted in responder bias. While we cannot claim generalisability for the themes identified in this small qualitative study, they are consistent with the findings of other studies on the views of providers and patients [21,22,35,38,51] and suggest themes for further exploration. Care was also taken to ensure that study participants reflected a variety of prenatal experiences with respect to clinical setting.…”

Section: Limitationssupporting

confidence: 85%

“…The perspectives and experiences of these providers allow insight into the clinical benefits, burdens, and potential future of cfDNA screening in clinical practice. While these providers are certainly not the only stakeholders bearing responsibility in this particular setting, they do hold an important obligation, given how frequently they are put in the position of first discussing cfDNA screening with the patient and later delivering the results [22]. In addition, these data reveal that the providers in this study perceived themselves to be gatekeepers, with a duty to provide their patients with responsible prenatal care.…”

Section: Discussionmentioning

confidence: 93%

“…Existing literature indicates substantial variation in the clinical integration of cfDNA screening not only internationally but also within certain countries [18–21]. In the United States, one recent survey found that general obstetricians, rather than specialists, initially discuss cfDNA screening with patients four times out of five, and three quarters have these conversations during the initial patient visit; only about half said they regularly send their patients to a specialist for in-depth conversations [22]. Furthermore, while the clinical integration of cfDNA screening has shown benefits for specific patient populations [23,24], significant misunderstandings about the technology have been identified among providers and patients alike [25,26].…”

Section: Introductionmentioning

confidence: 99%

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“I think we’ve got too many tests!”: Prenatal providers’ reflections on ethical and clinical challenges in the practice integration of cell-free DNA screening

Gammon

Kraft

Michie

et al. 2016

Ethics, Medicine and Public Health

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Background The recent introduction of cell-free DNA-based non-invasive prenatal screening (cfDNA screening) into clinical practice was expected to revolutionize prenatal testing. cfDNA screening for fetal aneuploidy has demonstrated higher test sensitivity and specificity for some conditions than conventional serum screening and can be conducted early in the pregnancy. However, it is not clear whether and how clinical practices are assimilating this new type of testing into their informed consent and counselling processes. Since the introduction of cfDNA screening into practice in 2011, the uptake and scope have increased dramatically. Prenatal care providers are under pressure to stay up to date with rapidly changing cfDNA screening panels, manage increasing patient demands, and keep up with changing test costs, all while attempting to use the technology responsibly and ethically. While clinical literature on cfDNA screening has shown benefits for specific patient populations, it has also identified significant misunderstandings among providers and patients alike about the power of the technology. The unique features of cfDNA screening, in comparison to established prenatal testing technologies, have implications for informed decision-making and genetic counselling that must be addressed to ensure ethical practice. Objectives This study explored the experiences of prenatal care providers at the forefront of non-invasive genetic screening in the United States to understand how this testing changes the practice of prenatal medicine. We aimed to learn how the experience of providing and offering this testing differs from established prenatal testing methodologies. These differences may necessitate changes to patient education and consent procedures to maintain ethical practice. Methods We used the online American Congress of Obstetricians and Gynecologists Physician Directory to identify a systematic sample of five prenatal care providers in each U.S. state and the District of Columbia. Beginning with the lowest zip code in each state, we took every fifth name from the directory, excluding providers who were retired, did not currently practice in the state in which they were listed, or were not involved in a prenatal specialty. After repeating this step twice and sending a total of 461 invitations, 37 providers expressed interest in participating, and we completed telephone interviews with 21 providers (4.6%). We developed a semi-structured interview guide including questions about providers’ use of and attitudes toward cfDNA screening. A single interviewer conducted and audio-recorded all interviews by telephone, and the interviews lasted approximately 30 minutes each. We collaboratively developed a codebook through an iterative process of transcript review and code application, and a primary coder coded all transcripts. Results Prenatal care providers have varying perspectives on the advantages of cfDNA screening and express a range of concerns regarding the implementation of cfDNA screening in practice. ...

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Section: Discussionsupporting

confidence: 88%

Section: Limitationssupporting

confidence: 85%

Section: Discussionmentioning

confidence: 93%

Section: Introductionmentioning

confidence: 99%

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“I think we’ve got too many tests!”: Prenatal providers’ reflections on ethical and clinical challenges in the practice integration of cell-free DNA screening

Gammon

Kraft

Michie

et al. 2016

Ethics, Medicine and Public Health

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“…A small number of studies have looked at the views of health professionals regarding NIPT and the need for educational resources for health professionals that are accurate and effective has been highlighted [23–30]. Here we aimed to develop and evaluate training resources to support midwives and other health professionals offering NIPT for Down syndrome.…”

Section: Introductionmentioning

confidence: 99%

Development and evaluation of training resources to prepare health professionals for counselling pregnant women about non-invasive prenatal testing for Down syndrome: a mixed methods study

Oxenford

Daley

Lewis

et al. 2017

BMC Pregnancy Childbirth

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BackgroundThe availability of non-invasive prenatal testing (NIPT) for aneuploidies is expanding rapidly throughout the world. Training health professionals to offer NIPT in a way that supports informed choice is essential for implementation. The aim of this study was to develop and evaluate a training package for health professionals to support the introduction of NIPT into clinical practice.MethodsTraining on NIPT was offered to health professionals, primarily midwives, involved in Down syndrome screening and testing in eight hospitals located in England and Scotland as part of a research study evaluating the implementation of NIPT in the UK National Health Service. Training was evaluated using a mixed methods approach that included quantitative questionnaires at three time points and post-training qualitative interviews. The questionnaires measured confidence, self-perceived knowledge and actual knowledge about NIPT for Down syndrome. Interviews explored opinions about the training and experiences of offering NIPT.ResultsThe training provided to the health professionals was found to positively impact on their confidence in discussing NIPT with women in their clinic, and both their perceived and actual knowledge and understanding of NIPT was improved. Knowledge remained weak in four areas; cell-free fetal DNA levels increase with gestation; turnaround time for NIPT results; cell-free fetal DNA is placental in origin; and NIPT false positive rate.ConclusionsTraining materials, including a lesson plan, PowerPoint presentation and written factsheet on NIPT, have been developed and evaluated for use in educating midwives and supporting the introduction of NIPT. Implementation of training should include a greater focus on the areas where knowledge remained low. Some groups of midwives will need additional training or support to optimise their confidence in discussing NIPT with women.Electronic supplementary materialThe online version of this article (doi:10.1186/s12884-017-1315-7) contains supplementary material, which is available to authorized users.

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Receiving the news of Down syndrome in the era of prenatal testing

Crombag¹,

Page-Christiaens

Skotko

et al. 2019

American J of Med Genetics Pt A

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ObjectiveTo explore the prenatal trajectory and the experiences of mothers of a child with Down syndrome (DS) at the time of receiving information or test results when participating in a nationwide prenatal screening program.MethodsAn online questionnaire study was completed by mothers of children with DS born between January 1, 2010 and February 28, 2016 (n = 212). Data were collected between February 15 and 28, 2016.ResultsMost of the live born children with DS were diagnosed postnatally. The majority of their mothers had explicitly chosen not to have prenatal DS screening. Of the 39 mothers prenatally informed their child might have DS, only 49% were completely or mostly satisfied about the information provided by their clinical providers at that time. About 16% of women (of the 38 that answered this question) recall some perceived emphasis on the option of terminating pregnancy as the first choice. Mothers who had received a postnatal diagnosis rated the experience as more positive than their counterparts who received prenatal diagnoses.ConclusionWith recent developments in screening, more parents are expected to receive a DS diagnosis before birth. Meeting the parents' individual counseling needs at the time of prenatal diagnosis requires careful exploration of their personal values and preferences.

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The use of noninvasive prenatal testing in obstetric care: educational resources, practice patterns, and barriers reported by a national sample of clinicians

Cited by 44 publications

References 38 publications

“I think we’ve got too many tests!”: Prenatal providers’ reflections on ethical and clinical challenges in the practice integration of cell-free DNA screening

“I think we’ve got too many tests!”: Prenatal providers’ reflections on ethical and clinical challenges in the practice integration of cell-free DNA screening

Development and evaluation of training resources to prepare health professionals for counselling pregnant women about non-invasive prenatal testing for Down syndrome: a mixed methods study

Receiving the news of Down syndrome in the era of prenatal testing

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