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Published in: Journal of Genetic Counseling 6/2017

Open Access 01-12-2017 | Original Research

Women’s Experience with Non-Invasive Prenatal Testing and Emotional Well-being and Satisfaction after Test-Results

Authors: Rachèl V. van Schendel, G. C. M. Lieve Page-Christiaens, Lean Beulen, Caterina M. Bilardo, Marjon A. de Boer, Audrey B. C. Coumans, Brigitte H. W. Faas, Irene M. van Langen, Klaske D. Lichtenbelt, Merel C. van Maarle, Merryn V. E. Macville, Dick Oepkes, Eva Pajkrt, Lidewij Henneman, for the Dutch NIPT Consortium

Published in: Journal of Genetic Counseling | Issue 6/2017

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Abstract

Increasingly, high-risk pregnant women opt for non-invasive prenatal testing (NIPT) instead of invasive diagnostic testing. Since NIPT is less accurate than invasive testing, a normal NIPT result might leave women less reassured. A questionnaire study was performed among pregnant women with elevated risk for fetal aneuploidy based on first-trimester combined test (risk ≥1:200) or medical history, who were offered NIPT in the nationwide Dutch TRIDENT study. Pre- and post-test questionnaires (n = 682) included measures on: experiences with NIPT procedure, feelings of reassurance, anxiety (State-Trait Anxiety Inventory, STAI), child-related anxiety (PRAQ-R), and satisfaction. The majority (96.1%) were glad to have been offered NIPT. Most (68.5%) perceived the waiting time for NIPT results (mean: 15 days, range 5–32) as (much) too long. Most women with a normal NIPT result felt reassured (80.9%) or somewhat reassured (15.7%). Levels of anxiety and child-related anxiety were significantly lower after receiving a normal NIPT result as compared to the moment of intake (p < 0.001). Women with inadequate health literacy or a medical history (e.g. previous child with trisomy) experienced significantly higher post-test-result anxiety (Mean (M) STAI = 31.6 and 30.0, respectively) compared to those with adequate health literacy (M = 28.6) and no medical history (M = 28.6), indicating these women might benefit from extra information and/or guidance when communicating NIPT test-results. Introducing NIPT as an alternative to invasive testing, led to an offer that satisfied and largely reassured high-risk pregnant women.
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Literature
go back to reference ACMG. (2013). American College of Medical Genetics statement on noninvasive prenatal screening for fetal aneuploidy. Genetics in Medicine, 15, 395–398.CrossRef ACMG. (2013). American College of Medical Genetics statement on noninvasive prenatal screening for fetal aneuploidy. Genetics in Medicine, 15, 395–398.CrossRef
go back to reference Allyse, M., Sayres, L. C., Goodspeed, T. A., & Cho, M. K. (2014). Attitudes towards Non-Invasive Prenatal Testing for aneuploidy among United States adults of reproductive age. Journal of Perinatology, 34, 429–434.CrossRefPubMedPubMedCentral Allyse, M., Sayres, L. C., Goodspeed, T. A., & Cho, M. K. (2014). Attitudes towards Non-Invasive Prenatal Testing for aneuploidy among United States adults of reproductive age. Journal of Perinatology, 34, 429–434.CrossRefPubMedPubMedCentral
go back to reference Bekker, H. L., Legare, F., Stacey, D., O’Connor, A., & Lemyre, L. (2003). Is anxiety an appropriate measure of decision aid effectiveness: a systematic review. Patient Education and Counselling, 50, 255–262.CrossRef Bekker, H. L., Legare, F., Stacey, D., O’Connor, A., & Lemyre, L. (2003). Is anxiety an appropriate measure of decision aid effectiveness: a systematic review. Patient Education and Counselling, 50, 255–262.CrossRef
go back to reference Brady, P., Brison, N., Van Den Bogaert, K., de Ravel, T., Peeters, H., Van Esch, H., et al. (2016). Clinical implementation of NIPT- technical and biological challenges. Clinical Genetics, 89, 523–530.CrossRefPubMed Brady, P., Brison, N., Van Den Bogaert, K., de Ravel, T., Peeters, H., Van Esch, H., et al. (2016). Clinical implementation of NIPT- technical and biological challenges. Clinical Genetics, 89, 523–530.CrossRefPubMed
go back to reference Chetty, S., Garabedian, M. J., & Norton, M. E. (2013). Uptake of noninvasive prenatal testing (NIPT) in women following positive aneuploidy screening. Prenatal Diagnosis, 33, 542–546.CrossRefPubMed Chetty, S., Garabedian, M. J., & Norton, M. E. (2013). Uptake of noninvasive prenatal testing (NIPT) in women following positive aneuploidy screening. Prenatal Diagnosis, 33, 542–546.CrossRefPubMed
go back to reference Chew, L., Bradley, K., & Boyko, E. (2004). Brief questions to identify patients with inadequate health literacy. Family Medicine, 36, 588–594.PubMed Chew, L., Bradley, K., & Boyko, E. (2004). Brief questions to identify patients with inadequate health literacy. Family Medicine, 36, 588–594.PubMed
go back to reference Dondorp, W., de Wert, G., Bombard, Y., Bianchi, D. W., Bergmann, C., Borry, P., et al. (2015). Non-invasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening. European Journal of Human Genetics, 23, 1438–1450.CrossRefPubMedPubMedCentral Dondorp, W., de Wert, G., Bombard, Y., Bianchi, D. W., Bergmann, C., Borry, P., et al. (2015). Non-invasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening. European Journal of Human Genetics, 23, 1438–1450.CrossRefPubMedPubMedCentral
go back to reference Faisal-Cury, A., & Rossi Menezes, P. (2007). Prevalence of anxiety and depression during pregnancy in a private setting sample. Archives Womens Mental Health, 10, 25–32.CrossRef Faisal-Cury, A., & Rossi Menezes, P. (2007). Prevalence of anxiety and depression during pregnancy in a private setting sample. Archives Womens Mental Health, 10, 25–32.CrossRef
go back to reference Gil, M. M., Quezada, M. S., Revello, R., Akolekar, R., & Nicolaides, K. H. (2015). Analysis of cell-free DNA in maternal blood in screening for fetal aneuploidies: updated meta-analysis. Ultrasound in Obstetrics & Gynecology, 45, 249–266.CrossRef Gil, M. M., Quezada, M. S., Revello, R., Akolekar, R., & Nicolaides, K. H. (2015). Analysis of cell-free DNA in maternal blood in screening for fetal aneuploidies: updated meta-analysis. Ultrasound in Obstetrics & Gynecology, 45, 249–266.CrossRef
go back to reference Gitsels-van der Wal, J., Verhoeven, P. S., Mannien, J., Martin, L., Reinders, H. S., Spelten, E., & Hutton, E. K. (2014). Factors affecting the uptake of prenatal screening tests for congenital anomalies; a multicentre prospective cohort study. BMC Pregnancy and Childbirth, 14, 1–12.CrossRef Gitsels-van der Wal, J., Verhoeven, P. S., Mannien, J., Martin, L., Reinders, H. S., Spelten, E., & Hutton, E. K. (2014). Factors affecting the uptake of prenatal screening tests for congenital anomalies; a multicentre prospective cohort study. BMC Pregnancy and Childbirth, 14, 1–12.CrossRef
go back to reference Green, J. M., Hewison, J., Bekker, H. L., Bryant, L. D., Cuckle, H. S. (2004). Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review. Health Technololy Assessment, 8:iii, ix–x, 1–109. Green, J. M., Hewison, J., Bekker, H. L., Bryant, L. D., Cuckle, H. S. (2004). Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review. Health Technololy Assessment, 8:iii, ix–x, 1–109.
go back to reference Huizink, A. C., Mulder, E. J. H., Robles de Medina, P. G., Visser, G. H. A., & Buitelaar, J. K. (2004). Is pregnancy anxiety a distinctive syndrome? Early Human Development, 79, 81–91.CrossRefPubMed Huizink, A. C., Mulder, E. J. H., Robles de Medina, P. G., Visser, G. H. A., & Buitelaar, J. K. (2004). Is pregnancy anxiety a distinctive syndrome? Early Human Development, 79, 81–91.CrossRefPubMed
go back to reference Lewis, C., Silcock, C., & Chitty, L. S. (2013). Non-invasive prenatal testing for Down’s Syndrome: pregnant women’s views and likely uptake. Public Health Genomics, 16, 223–232.CrossRefPubMed Lewis, C., Silcock, C., & Chitty, L. S. (2013). Non-invasive prenatal testing for Down’s Syndrome: pregnant women’s views and likely uptake. Public Health Genomics, 16, 223–232.CrossRefPubMed
go back to reference Lewis, C., Hill, M., & Chitty, L. S. (2016). Women’s Experiences and Preferences for Service Delivery of Non-Invasive Prenatal Testing for Aneuploidy in a Public Health Setting: A Mixed Methods Study. PLoS One, 11, e0153147.CrossRefPubMedPubMedCentral Lewis, C., Hill, M., & Chitty, L. S. (2016). Women’s Experiences and Preferences for Service Delivery of Non-Invasive Prenatal Testing for Aneuploidy in a Public Health Setting: A Mixed Methods Study. PLoS One, 11, e0153147.CrossRefPubMedPubMedCentral
go back to reference Lou, S., Mikkelsen, L., Hvidman, L., Petersen, O. B., & Nielsen, C. P. (2015). Does screening for Down’s syndrome cause anxiety in pregnant women? A systematic review. Acta Obstetricia et Gynecologica Scandinavica, 94, 15–27.CrossRefPubMed Lou, S., Mikkelsen, L., Hvidman, L., Petersen, O. B., & Nielsen, C. P. (2015). Does screening for Down’s syndrome cause anxiety in pregnant women? A systematic review. Acta Obstetricia et Gynecologica Scandinavica, 94, 15–27.CrossRefPubMed
go back to reference Mancuso, R. A., Schetter, C. D., Rini, C. M., Roesch, S. C., & Hobel, C. J. (2004). Maternal Prenatal Anxiety and Corticotropin-Releasing Hormone Associated With Timing of Delivery. Psychosomatic Medicine, 66, 762–769.CrossRefPubMed Mancuso, R. A., Schetter, C. D., Rini, C. M., Roesch, S. C., & Hobel, C. J. (2004). Maternal Prenatal Anxiety and Corticotropin-Releasing Hormone Associated With Timing of Delivery. Psychosomatic Medicine, 66, 762–769.CrossRefPubMed
go back to reference Marteau, T. M., & Bekker, H. (1992). The development of a six-item short-form of the state scale of the Spielberger State-Trait Anxiety Inventory (STAI). British Journal of Clinical Psychology, 31, 301–306.CrossRefPubMed Marteau, T. M., & Bekker, H. (1992). The development of a six-item short-form of the state scale of the Spielberger State-Trait Anxiety Inventory (STAI). British Journal of Clinical Psychology, 31, 301–306.CrossRefPubMed
go back to reference Michie, S., Dormandy, E., & Marteau, T. M. (2002). The multi-dimensional measure of informed choice: a validation study. Patient Education and Counseling, 48, 87–91.CrossRefPubMed Michie, S., Dormandy, E., & Marteau, T. M. (2002). The multi-dimensional measure of informed choice: a validation study. Patient Education and Counseling, 48, 87–91.CrossRefPubMed
go back to reference Mikamo, S., & Nakatsuka, M. (2015). Knowledge and Attitudes toward Non-invasive Prenatal Testing among Pregnant Japanese Women. Acta Med Okayama, 69, 155–163.PubMed Mikamo, S., & Nakatsuka, M. (2015). Knowledge and Attitudes toward Non-invasive Prenatal Testing among Pregnant Japanese Women. Acta Med Okayama, 69, 155–163.PubMed
go back to reference Mulder, E. J. H., Robles de Medina, P. G., Huizink, A. C., Van den Bergh, B. R. H., Buitelaar, J. K., & Visser, G. H. A. (2002). Prenatal maternal stress: effects on pregnancy and the (unborn) child. Early Human Development, 70, 3–14.CrossRefPubMed Mulder, E. J. H., Robles de Medina, P. G., Huizink, A. C., Van den Bergh, B. R. H., Buitelaar, J. K., & Visser, G. H. A. (2002). Prenatal maternal stress: effects on pregnancy and the (unborn) child. Early Human Development, 70, 3–14.CrossRefPubMed
go back to reference Nakata, N., Wang, Y., & Bhatt, S. (2010). Trends in prenatal screening and diagnostic testing among women referred for advanced maternal age. Prenatal Diagnosis, 30, 198–206.PubMed Nakata, N., Wang, Y., & Bhatt, S. (2010). Trends in prenatal screening and diagnostic testing among women referred for advanced maternal age. Prenatal Diagnosis, 30, 198–206.PubMed
go back to reference Nakic Rados, S., Kosec, V., & Gall, V. (2013). The psychological effects of prenatal diagnostic procedures: maternal anxiety before and after invasive and noninvasive procedures. Prenatal Diagnosis, 33, 1194–1200.CrossRefPubMed Nakic Rados, S., Kosec, V., & Gall, V. (2013). The psychological effects of prenatal diagnostic procedures: maternal anxiety before and after invasive and noninvasive procedures. Prenatal Diagnosis, 33, 1194–1200.CrossRefPubMed
go back to reference Oepkes, D., Page-Christiaens, G. C., Bax, C. J., Bekker, M. N., Bilardo, C. M., Boon, E. M., et al. (2016). Trial by Dutch laboratories for evaluation of non-invasive prenatal testing. Part I-Clinical impact. Prenatal Diagnosis, 36, 1083–1090.CrossRefPubMedPubMedCentral Oepkes, D., Page-Christiaens, G. C., Bax, C. J., Bekker, M. N., Bilardo, C. M., Boon, E. M., et al. (2016). Trial by Dutch laboratories for evaluation of non-invasive prenatal testing. Part I-Clinical impact. Prenatal Diagnosis, 36, 1083–1090.CrossRefPubMedPubMedCentral
go back to reference Sarkar, P., Bergman, K., Fisk, N. M., & Glover, V. (2006). Maternal anxiety at amniocentesis and plasma cortisol. Prenatal Diagnosis, 26, 505–509.CrossRefPubMed Sarkar, P., Bergman, K., Fisk, N. M., & Glover, V. (2006). Maternal anxiety at amniocentesis and plasma cortisol. Prenatal Diagnosis, 26, 505–509.CrossRefPubMed
go back to reference Tabor, A., & Alfirevic, Z. (2010). Update on procedure-related risks for prenatal diagnosis techniques. Fetal Diagnosis and Therapy, 27, 1–7.CrossRefPubMed Tabor, A., & Alfirevic, Z. (2010). Update on procedure-related risks for prenatal diagnosis techniques. Fetal Diagnosis and Therapy, 27, 1–7.CrossRefPubMed
go back to reference Tamminga, S., van Schendel, R. V., Rommers, W., Bilardo, C. M., Pajkrt, E., Dondorp, W. J., et al. (2015). Changing to NIPT as a first-tier screening test and future perspectives: opinions of health professionals. Prenatal Diagnosis, 35, 1316–1323.CrossRefPubMed Tamminga, S., van Schendel, R. V., Rommers, W., Bilardo, C. M., Pajkrt, E., Dondorp, W. J., et al. (2015). Changing to NIPT as a first-tier screening test and future perspectives: opinions of health professionals. Prenatal Diagnosis, 35, 1316–1323.CrossRefPubMed
go back to reference Taylor, J., Chock, V., & Hudgins, L. (2014). NIPT in a clinical setting: an analysis of uptake in the first months of clinical availability. Journal of Genetic Counseling, 23, 72–78.CrossRefPubMed Taylor, J., Chock, V., & Hudgins, L. (2014). NIPT in a clinical setting: an analysis of uptake in the first months of clinical availability. Journal of Genetic Counseling, 23, 72–78.CrossRefPubMed
go back to reference van der Bij, A. K., de Weerd, S., Cikot, R. J. L. M., Steegers, E. A. P., & Braspenning, J. C. C. (2003). Validation of the Dutch Short Form of the State Scale of the Spielberger State-Trait Anxiety Inventory: Considerations for Usage in Screening Outcomes. Public Health Genomics, 6, 84–87.CrossRef van der Bij, A. K., de Weerd, S., Cikot, R. J. L. M., Steegers, E. A. P., & Braspenning, J. C. C. (2003). Validation of the Dutch Short Form of the State Scale of the Spielberger State-Trait Anxiety Inventory: Considerations for Usage in Screening Outcomes. Public Health Genomics, 6, 84–87.CrossRef
go back to reference van Schendel, R. V., Dondorp, W. J., Timmermans, D. R., van Hugte, E. J., de Boer, A., Pajkrt, E., et al. (2015). NIPT-based screening for Down syndrome and beyond: what do pregnant women think? Prenatal Diagnosis, 35, 598–604.CrossRefPubMed van Schendel, R. V., Dondorp, W. J., Timmermans, D. R., van Hugte, E. J., de Boer, A., Pajkrt, E., et al. (2015). NIPT-based screening for Down syndrome and beyond: what do pregnant women think? Prenatal Diagnosis, 35, 598–604.CrossRefPubMed
go back to reference van Schendel, R. V., Page-Christiaens, G. C., Beulen, L., Bilardo, C. M., de Boer, M. A., Coumans, A. B., et al. (2016). Trial by Dutch laboratories for evaluation of non-invasive prenatal testing. Part II-Women’s perspectives. Prenatal Diagnosis, 36, 1091–1098.CrossRefPubMedPubMedCentral van Schendel, R. V., Page-Christiaens, G. C., Beulen, L., Bilardo, C. M., de Boer, M. A., Coumans, A. B., et al. (2016). Trial by Dutch laboratories for evaluation of non-invasive prenatal testing. Part II-Women’s perspectives. Prenatal Diagnosis, 36, 1091–1098.CrossRefPubMedPubMedCentral
go back to reference Vanstone, M., Yacoub, K., Giacomini, M., Hulan, D., & McDonald, S. (2015). Women’s Experiences of Publicly Funded Non-Invasive Prenatal Testing in Ontario, Canada: Considerations for Health Technology Policy-Making. Qualitative Health Research, 25, 1069–1084.CrossRefPubMed Vanstone, M., Yacoub, K., Giacomini, M., Hulan, D., & McDonald, S. (2015). Women’s Experiences of Publicly Funded Non-Invasive Prenatal Testing in Ontario, Canada: Considerations for Health Technology Policy-Making. Qualitative Health Research, 25, 1069–1084.CrossRefPubMed
go back to reference Wittman, A. T., Hashmi, S. S., Mendez-Figueroa, H., Nassef, S., Stevens, B., & Singletary, C. N. (2016). Patient Perception of Negative Noninvasive Prenatal Testing Results. American Journal of Perinatal Reports, 6, e391–e406.CrossRef Wittman, A. T., Hashmi, S. S., Mendez-Figueroa, H., Nassef, S., Stevens, B., & Singletary, C. N. (2016). Patient Perception of Negative Noninvasive Prenatal Testing Results. American Journal of Perinatal Reports, 6, e391–e406.CrossRef
Metadata
Title
Women’s Experience with Non-Invasive Prenatal Testing and Emotional Well-being and Satisfaction after Test-Results
Authors
Rachèl V. van Schendel
G. C. M. Lieve Page-Christiaens
Lean Beulen
Caterina M. Bilardo
Marjon A. de Boer
Audrey B. C. Coumans
Brigitte H. W. Faas
Irene M. van Langen
Klaske D. Lichtenbelt
Merel C. van Maarle
Merryn V. E. Macville
Dick Oepkes
Eva Pajkrt
Lidewij Henneman
for the Dutch NIPT Consortium
Publication date
01-12-2017
Publisher
Springer US
Published in
Journal of Genetic Counseling / Issue 6/2017
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI
https://doi.org/10.1007/s10897-017-0118-3

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