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Cited by 368Prenatal Screening and DiagnosticsMaternal Mental Health During Pregnancy and PostpartumPatient-Provider Communication in Healthcare

The DOI matches its Crossref record; 132 of the 134 references it cites were found in a registry or an index.

Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review

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Green, J, Hewison, J, Bekker, H, Bryant, L, Cuckle, H·2004·Health Technology Assessment
DOI 10.3310/hta8330
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Abstract

OBJECTIVES: To address five broad questions concerned with knowledge, anxiety, factors associated with participation/non-participation in screening programmes and the long-term sequelae of false-positive, true-positive in newborns and true-negative results. DATA SOURCES: Five electronic databases, two journals and attempts were made to locate unpublished work. REVIEW METHODS: This review started from a substantial literature base that provided the basis for (a) scoping the literature, (b) informing search strategy terms and (c) identifying preliminary article inclusion and exclusion criteria. The main eligibility criteria were: any screening programme aimed at pregnant women or newborn babies that included a 'genetic' target condition, this included chromosomal anomalies; any study that reported psychosocial data collected directly from parents. The data extraction form developed for this study elicited data from the selected studies. The data were entered into a database, which provided a summary of the included papers. RESULTS: A total of 288 candidate publications were identified, 106 of which were eligible: 78 were concerned with antenatal screening and 28 with newborn screening. It was found that levels of knowledge adequate for decision-making were not being achieved despite information leaflets and videos having some effect. Studies that have succeeded in increasing knowledge have not observed a corresponding increase in anxiety, although some anxiety might be an appropriate response and may aid coping and decision-making. Anxiety is clearly raised in women receiving positive screening results, especially young women. However, evidence is lacking of a beneficial (i.e. reassuring) effect of receiving a screen-negative result. Anxiety in screen-positive women falls on receipt of subsequent reassuring results, but some residual anxiety may remain. A minority (perhaps up to 30%) of women receiving a screen-positive result in pregnancy expressed regret about their screening decision. Uptake of neonatal screening has been treated as a 'given' and not as a research topic. CONCLUSIONS: The results of this review have many implications for the work of the National Screening Committee. The most pressing of these, in order of priority, relate to: the inadequacy of current procedures for achieving informed consent; the cost of providing a satisfactory service; the unmet needs of 'false-positives', and the unmet needs of women's partners, particularly in carrier screening. It is suggested that research is conducted on the above four topics in order to fill gaps in the evidence base that relate to screening technologies which have been available for many years. In addition, future screening programmes will create a new list of research questions, based on the same main agenda but applied to new areas, for example, new conditions such as haemoglobinopathies and fragile X syndrome; new client groups such as young women and minority ethnic groups; and new testing modalities such as ultrasound.

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  1. Rowley et al., 1988 103 Press and Browner, 1997 114
  2. Kornman et al., 1997 113 Press and Browner, 1997 114
  3. Browner and Press, 1995 122 Loader et al., 1996 123
  4. Green JM. Calming or harming? A critical review of psychological effects of fetal diagnosis on pregnant women. London: Galton Institute, Occasional Papers, Second Series, No. 2; 1990.
  5. Burton BK, Dillard RG, Clark EN. The psychological impact of false positive elevations of maternal serum alpha-fetoprotein. Am J Obstet Gynaecol 1985;151:77-82.
  6. Green JM. Serum screening for Down's syndrome: the experiences of obstetricians in England & Wales. BMJ 1994;309:769-72.
  7. Berne-Frommel K, Kjessler B, Josefson G. Anxiety concerning fetal malformation in women who accept or refuse alpha-fetoprotein screening in pregnancy. J Psychosom Obstet Gynaecol 1983;2:94-7.
  8. Burton BK, Dillard RG, Clark EN. Maternal serum alpha-fetoprotein screening: the effect of participation on anxiety and attitude toward pregnancy in women with normal results. Am J Obstet Gynecol 1985;152:540-3.
  9. Statham H, Green J, Snowdon C. Psychological and social aspects of screening for fetal abnormality during routine antenatal care. In Robinson S, Thomson A, Tickner V, editors. Proceedings of the 1992 Research and the Midwife Conference. Manchester: School of Nursing. University of Manchester; 1993. pp. 44-62.
  10. Bekker HL. Decision making and prenatal testing. PhD thesis, University of Leeds; 1999.
  11. Middleton A. Attitudes of deaf and hearing individuals towards issues surrounding genetic testing for deafness. PhD thesis, University of Leeds; 1999.
  12. Bryant LD. Understandings of Down's syndrome in the prenatal testing context. PhD thesis, University of Leeds; 2003.
  13. Glazier R, Goel V, Holzapfel S, Summers A, Pugh P, Yeung M. Written patient information about triple marker screening: a randomised controlled trial. Obstet Gynecol 1997;90:769-74.
  14. Chilaka VN, Konje JC, Stewart CR, Narayan H, Taylor DJ. Knowledge of Down syndrome in pregnant women from different ethnic groups. Prenat Diagn 2001;21:159-64.
  15. Graham W, Smith P, Kamal A, Fitzmaurice A, Smith N, Hamilton N. Randomised controlled trial comparing effectiveness of touch screen system with leaflet for providing women with information on prenatal tests. BMJ 2000; 320:155-60.
  16. Michie S, Smith D, Marteau TM. Prenatal tests: how are women deciding? Prenat Diagn 1999; 19:743-8.
  17. Goel V, Glazier R, Holzapfel S, Pugh P, Summers A. Evaluating patient's knowledge of maternal serum screening. Prenat Diagn 1996;16:425-30.
  18. Press N, Browner CH. Characteristics of women who refuse an offer of prenatal diagnosis: data from the California maternal serum alpha fetoprotein blood test experience. Am J Med Genet 1998;78:433-45.
  19. Santalahti P, Aro AR, Hemminki E, Helenius H, Ryynanen M. On what grounds do women participate in prenatal screening? Prenat Diagn 1998;18:153-65.
  20. Gekas J, Gondry J, Mazur S, Cesbron P, Thepot F. Informed consent to serum screening for Down syndrome: are women given adequate information? Prenat Diagn 1999;19:1-7.
  21. Al-Jader LN, Parry-Langdon N, Smith RJ. Survey of attitudes of pregnant women towards Down syndrome screening. Prenat Diagn 2000;20:23-9.
  22. Marteau TM, Saidi G, Goodburn S, Lawton J, Michie S, Bobrow M. Numbers or words? A randomized controlled trial of presenting screen negative results to pregnant women. Prenat Diagn 2000;20:714-18.
  23. Weinans MJ, Huijssoon AM, Tymstra T, Gerrits MC, Beekhuis JR, Mantingh A. How women deal with the results of serum screening for Down syndrome in the second trimester of pregnancy. Prenat Diagn 2000;20:705-8.
  24. Royal College of Obstetricians and Gynaecologists. Report of the working party on biochemical markers and the detection of Down's syndrome. London: RCOG Press; 1993.
  25. Spielberger C, Gorsuch RL, Lushene R, Vagg PR, Jacobs GA. State-trait anxiety inventory: STAI form Y. Palo Alto, CA: Consulting Psychologists Press; 1970.
  26. Schwarzer R, Quast H-H, Jerusalem M. The impact of anxiety and self-consciousness on cognitive appraisals in the achievement process. In Schwarzer R, van der Ploeg HM, Spielberger CD, editors. Advances in test anxiety research, Vol. 5. Lisse: Swets & Zeitlinger; 1987. pp. 39-52.
  27. Evans MI, Bottoms SF, Carlucci T, Grant J, Belsky RL, Solyom AE, et al. Determinants of altered anxiety after abnormal maternal serum alpha-fetoprotein screening. Am J Obstet Gynecol 1988;159:1501-4.
  28. Quagliarini D, Betti S, Brambati B, Nicolini U. Coping with serum screening for Down syndrome when the results is given as a numeric value. Prenat Diagn 1998;18:816-21.
  29. Keenan KL, Basso D, Goldkrand J, Butler WJ. Low level of maternal serum alpha-fetoprotein: its associated anxiety and the effects of genetic counselling. Am J Obstet Gynecol 1991;164:54-6.
  30. Dodds R, Newburn M. Support during screening - an NCT report. Mod Midwife 1997;7:23-6.

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Metadata

Authors
Green, J., Hewison, J., Bekker, H., Bryant, L., & Cuckle, H.
Affiliations
University of Leeds (GB)
ORCID
Venue
Health Technology Assessment
Publisher
National Institute for Health and Care Research
Published
2004-08
Volume
8
Issue
33
Pages
iii, ix-x, 1
ISSN
  • 1366-5278 (ISSN-L)
  • 2046-4924
DOI
10.3310/hta8330
OpenAlex
W2162637943
Cited by
368
References
134
Citations by year
2026: 2 · 2025: 6 · 2024: 8 · 2023: 6 · 2022: 6 · 2021: 6 · 2020: 11 · 2019: 5 · 2018: 9 · 2017: 9 · 2016: 16 · 2015: 17 · 2014: 22 · 2013: 16 · 2012: 23
FWCI
2.61
Type
journal article
Language
en
Open access
Licence
Locations
  • Health Technology Assessment (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
  • DigitalGeorgetown (Georgetown University Library) (submittedVersion)
Funders
Health Technology Assessment programme (93/56/99)
Topics
  • Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Prenatal Screening and Diagnostics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Maternal Mental Health During Pregnancy and Postpartum
  • Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
Keywords
genetic screening, prenatal screening, newborn screening, psychosocial outcomes, parental anxiety, informed consent, screening uptake, false positives, carrier screening, chromosomal abnormalities, screening decision-making, National Screening Committee, screening program evaluation, hemoglobin screening, cystic fibrosis screening, sickle cell disease
MeSH terms
Adult, Anxiety, Female, Genetic Testing, United Kingdom, Humans, Infant, Newborn, Pregnancy, Prenatal Diagnosis, Neonatal Screening

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