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Cited by 85Prenatal Screening and DiagnosticsMaternal and Perinatal Health InterventionsPatient-Provider Communication in Healthcare

Women’s Experiences and Preferences for Service Delivery of Non-Invasive Prenatal Testing for Aneuploidy in a Public Health Setting: A Mixed Methods Study

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Lewis, Celine, Hill, Melissa, Chitty, Lyn S.·2016·PLOS ONE
DOI 10.1371/journal.pone.0153147PMC PMC4821600
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Abstract

Non-invasive prenatal testing (NIPT) for aneuploidy is currently only available in the UK through the private sector outside of the research arena. As part of an implementation study in the UK National Health Service we conducted a mixed methods study to assess women's experience of being offered NIPT using validated measures of decisional conflict, decisional regret and anxiety. Clinical service preferences were also explored. Women with a Down syndrome screening risk >1:1000 were invited to take part in the study and offered NIPT, NIPT and invasive testing (for women with a risk above 1:150) or no further testing. A cross-sectional survey and semi-structured interviews were conducted at two time points; at the time of testing and one month following receipt of results (or equivalent for NIPT decliners). In total, 845 questionnaires and 81 interviews were analysed. The main motivation to accept NIPT was for reassurance (30.8%). Decisional conflict occurred in a minimal number of cases (3.8%), however, none of the participants experienced decisional regret. Around a third (29.9%) of women had elevated anxiety at the time of testing, including intermediate risk women who traditionally would not be offered further testing (54.4% high risk; 20.1% medium risk), a finding supported through the qualitative interviews where prolonged or additional anxiety was found to occur in some medium risk cases. Women were overwhelmingly positive about the opportunity to have a test that was procedurally safe, accurate, reduced the need for invasive testing and identified cases of Down syndrome that might otherwise have been missed. Reassurance was identified as the main motivator for accepting NIPT, particularly amongst medium risk women, with high risk women inclined to accept NIPT to inform decisions around invasive testing. The current turnaround time for test result was identified as a key limitation. All the women interviewed thought NIPT should be adopted as part of NHS clinical practice, with the majority favouring NIPT offered as a first-line test. Our study highlights the potential that NIPT has to positively impact women's experience of prenatal testing for aneuploidy.

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  • Four included studies assessed anxiety with the Spielberger State-Trait Anxiety Inventory (STAI or short form STAI-6).

    “Four studies assessed anxiety with the Spielberger State-Trait Anxiety Inventory (STAI or short form STAI-6) [20–22, 24].”

    From Psychological and social consequences of non-invasive prenatal testing (NIPT): a scoping review (2019) · cites this paper as [20]

  • In the two studies that found low levels of decisional regret after receiving NIPT results, the participating women had received either positive or negative results, and no control group without NIPT was examined.

    “Similarly, in the two studies [20, 21] that found low levels of decisional regret after receiving NIPT results, the participating women had received either positive or negative results; no control group without NIPT was examined in the studies.”

    From Psychological and social consequences of non-invasive prenatal testing (NIPT): a scoping review (2019) · cites this paper as [20]

  • Most included studies recruited women with an elevated Down syndrome screening risk, while two studies recruited from an unselected population regarding Down syndrome screening.

    “Most studies recruited women with an elevated Down syndrome screening (DSS) risk (medium and/or high risk, cut-offs vary, range from > 1:1000 to 1:1–125) [20–22, 24, 25], two studies recruited from an unselected population regarding DSS [19, 23].”

    From Psychological and social consequences of non-invasive prenatal testing (NIPT): a scoping review (2019) · cites this paper as [20]

  • Five included studies assessed anxiety, psychological distress and/or decisional regret with validated psychological tests such as STAI, PRAQ-R, K6 or DRS.

    “Five studies assessed anxiety, psychological distress and/or decisional regret with validated psychological tests like the Spielberger State-Trait Anxiety Inventory (STAI or short form STAI-6), the Pregnancy-Related Anxiety Questionnaire-Revised (PRAQ-R), the Kessler Psychological Distress Scale (K6) or the Decisional Regret Scale (DRS) [20–24].”

    From Psychological and social consequences of non-invasive prenatal testing (NIPT): a scoping review (2019) · cites this paper as [20]

  • The scoping review identified seven studies that investigated psychological and/or social consequences after NIPT.

    “In this scoping review, we identified seven studies that investigated psychological and/or social consequences after NIPT [19–25].”

    From Psychological and social consequences of non-invasive prenatal testing (NIPT): a scoping review (2019) · cites this paper as [20]

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Research works printed but not linked: 1

  1. [18]Lewis C, Hill M, Skirton H, Chitty L. Development and validation of a measure of informed choice for women undergoing non-invasive prenatal testing for aneuploidy. Eur J Hum Genet. 2015;In press. PMC4867447 26508572

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Authors
Lewis, C., Hill, M., & Chitty, L. S.
Affiliations
Great Ormond Street Hospital for Children NHS Foundation Trust (GB)
Corresponding author
Lewis, Celine
ORCID
Venue
PLOS ONE
Publisher
Public Library of Science (PLoS)
Published
2016-04-05
Volume
11
Issue
4
Pages
e0153147
ISSN
1932-6203 (ISSN-L)
DOI
10.1371/journal.pone.0153147
PMC
PMC4821600
OpenAlex
W2330093892
Cited by
85
References
33
Citations by year
2026: 4 · 2025: 8 · 2024: 4 · 2023: 6 · 2022: 16 · 2021: 4 · 2020: 8 · 2019: 11 · 2018: 5 · 2017: 15 · 2016: 4
FWCI
13.58
Type
journal article
Language
en
Open access
Licence
Locations
  • PLoS ONE (publishedVersion, cc-by)
  • Europe PMC (PubMed Central) (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
  • Figshare (submittedVersion, cc-by)
Funders
  • National Institute for Health and Care Research (NF-SI-0513-10141, RP-PG-0707-10107)
  • Great Ormond Street Hospital Charity
  • Programme Grants for Applied Research (RP-PG-0707-10107)
Topics
  • Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Prenatal Screening and Diagnostics
  • Health Sciences › Medicine › Obstetrics and Gynecology › Maternal and Perinatal Health Interventions
  • Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
Keywords
non-invasive prenatal testing, preimplantation genetic testing for aneuploidy, Down syndrome, women's experiences, decisional conflict, decision regret, prenatal anxiety, service preferences, test turnaround time, invasive prenatal diagnosis
MeSH terms
Adult, Aneuploidy, Cross-Sectional Studies, Decision Making, Down Syndrome, Female, Genetic Testing, Humans, Middle Aged, Pregnancy, Prenatal Diagnosis, Public Health, Young Adult

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