Ambivalence among women who gave birth after receiving a negative result on non-invasive prenatal testing: a qualitative study

Abstract Background This study aimed to investigate the factors affecting ambivalent feelings among women who gave birth after having received negative results on non-invasive prenatal genetic testing (NIPT). Methods A questionnaire was sent to women who received a negative NIPT result, and a contents analysis was conducted for those 1562 women who responded to the open-ended question. The contents of these qualitative data were analyzed using the N-Vivo software package. Results Environmental factors, genetic counseling-related factors, and increased anticipatory anxiety affected the feeling of ambivalence among pregnant women. Furthermore, pregnant women desired more information regarding the detailed prognosis for individuals with Down syndrome and living with them and/or abortion, assuming the possibility that they were positive. Conclusions Three major interrelated factors affected the feeling of ambivalence in women.　Highlighting and discussing such factors during the genetic counseling may resolve some of these ambivalences, thereby enhancing the quality of decisions made by pregnant women.

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Qualitative investigation of the factors that generate ambivalent feelings in women who give birth after receiving negative results from non-invasive prenatal testing

10.21203/rs.2.12626/v4 ◽

2020 ◽

Author(s):

Junko Yotsumoto ◽

Akihiko Sekizawa ◽

Satomi Inoue ◽

Nobuhiro Suzumori ◽

Osamu Samura ◽

...

Keyword(s):

Genetic Counseling ◽

Pregnant Women ◽

Qualitative Data ◽

Prenatal Testing ◽

Qualitative Investigation ◽

Anticipatory Anxiety ◽

Related Factors ◽

Non Invasive ◽

Negative Results

Abstract Background: Women who receive negative results from non-invasive prenatal genetic testing (NIPT) may find that they later have mixed or ambivalent feelings, for example, feelings of accepting NIPT and regretting undergoing the test. This study aimed to investigate the factors generating ambivalent feelings among women who gave birth after having received negative results from NIPT. Methods: A questionnaire was sent to women who received a negative NIPT result, and a contents analysis was conducted focusing on ambivalent expressions for those 1562 women who responded the questionnaire. The qualitative data gathered from the questionnaire were analyzed using the N-Vivo software package. Results: Environmental factors, genetic counseling-related factors, and increased anticipatory anxiety, affected the feeling of ambivalence among pregnant women. Furthermore, pregnant women desired more information regarding the detailed prognosis for individuals with Down syndrome and living with them and/or termination, assuming the possibility that they were positive. Conclusions: Three major interrelated factors affected the feeling of ambivalence in women. High-lighting and discussing such factors during genetic counseling may resolve some of these ambivalences, thereby enhancing the quality of decisions made by pregnant women.

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Factors generating ambivalent feelings in women who gave birth after receiving a negative result on non-invasive prenatal testing: A qualitative study

10.21203/rs.2.12626/v2 ◽

2019 ◽

Author(s):

Junko Yotsumoto ◽

Akihiko Sekizawa ◽

Satomi Inoue ◽

Nobuhiro Suzumori ◽

Osamu Samura ◽

...

Keyword(s):

Genetic Counseling ◽

Pregnant Women ◽

Qualitative Data ◽

Prenatal Testing ◽

Anticipatory Anxiety ◽

Prenatal Genetic Testing ◽

Related Factors ◽

Non Invasive ◽

Negative Results

Abstract Background: Some women with negative results on non-invasive prenatal genetic testing (NIPT) may have ambivalent feelings later. This study aimed to investigate the factors generating ambivalent feel-ings among women who gave birth after having received negative results on NIPT. Methods: A questionnaire was sent to women who received a negative NIPT result, and a contents analysis was conducted for those 1562 women who responded to the open-ended question. The con-tents of these qualitative data were analyzed using the N-Vivo software package. Results: Environmental factors, genetic counseling-related factors, and increased anticipatory anxiety affected the feeling of ambivalence among pregnant women. Furthermore, pregnant women desired more information regarding the detailed prognosis for individuals with Down syndrome and living with them and/or abortion, assuming the possibility that they were positive. Conclusions: Three major interrelated factors affected the feeling of ambivalence in women. High-lighting and discussing such factors during genetic counseling may resolve some of these ambivalences, thereby enhancing the quality of decisions made by pregnant women.

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Qualitative investigation of the factors that generate ambivalent feelings in women who give birth after receiving negative results from non-invasive prenatal testing

10.21203/rs.2.12626/v3 ◽

2019 ◽

Author(s):

Junko Yotsumoto ◽

Akihiko Sekizawa ◽

Satomi Inoue ◽

Nobuhiro Suzumori ◽

Osamu Samura ◽

...

Keyword(s):

Genetic Counseling ◽

Pregnant Women ◽

Qualitative Data ◽

Prenatal Testing ◽

Qualitative Investigation ◽

Anticipatory Anxiety ◽

Related Factors ◽

Non Invasive ◽

Negative Results

Abstract Background: Women who receive negative results from non-invasive prenatal genetic testing (NIPT) may find that they later have mixed or ambivalent feelings, for example, feelings of accepting NIPT and regretting undergoing the test. This study aimed to investigate the factors generating ambivalent feelings among women who gave birth after having received negative results from NIPT. Methods: A questionnaire was sent to women who received a negative NIPT result, and a contents analysis was conducted focusing on ambivalent expressions for those 1562 women who responded the questionnaire. The qualitative data gathered from the questionnaire were analyzed using the N-Vivo software package. Results: Environmental factors, genetic counseling-related factors, and increased anticipatory anxiety, affected the feeling of ambivalence among pregnant women. Furthermore, pregnant women desired more information regarding the detailed prognosis for individuals with Down syndrome and living with them and/or termination, assuming the possibility that they were positive. Conclusions: Three major interrelated factors affected the feeling of ambivalence in women. Highlighting and discussing such factors during genetic counseling may resolve some of these ambivalences, thereby enhancing the quality of decisions made by pregnant women.

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Qualitative investigation of the factors that generate ambivalent feelings in women who give birth after receiving negative results from non-invasive prenatal testing

10.21203/rs.2.12626/v5 ◽

2020 ◽

Author(s):

Junko Yotsumoto ◽

Akihiko Sekizawa ◽

Satomi Inoue ◽

Nobuhiro Suzumori ◽

Osamu Samura ◽

...

Keyword(s):

Genetic Counseling ◽

Pregnant Women ◽

Qualitative Data ◽

Prenatal Testing ◽

Qualitative Investigation ◽

Anticipatory Anxiety ◽

Related Factors ◽

Non Invasive ◽

Negative Results

Abstract Background: Women who receive negative results from non-invasive prenatal genetic testing (NIPT) may find that they later have mixed or ambivalent feelings, for example, feelings of accepting NIPT and regretting undergoing the test. This study aimed to investigate the factors generating ambivalent feelings among women who gave birth after having received negative results from NIPT.Methods: A questionnaire was sent to women who received a negative NIPT result, and a contents analysis was conducted focusing on ambivalent expressions for those 1562 women who responded the questionnaire. The qualitative data gathered from the questionnaire were analyzed using the N-Vivo software package.Results: Environmental factors, genetic counseling-related factors, and increased anticipatory anxiety, affected the feeling of ambivalence among pregnant women. Furthermore, pregnant women desired more information regarding the detailed prognosis for individuals with Down syndrome and living with them and/or termination, assuming the possibility that they were positive.Conclusions: Three major interrelated factors affected the feeling of ambivalence in women. Highlighting and discussing such factors during genetic counseling may resolve some of these ambivalences, thereby enhancing the quality of decisions made by pregnant women.

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The Knowledge, Attitude, Practices, and Satisfaction of Non-Invasive Prenatal Testing among Chinese Pregnant Women under Different Payment Schemes: A Comparative Study

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph17197187 ◽

2020 ◽

Vol 17 (19) ◽

pp. 7187

Author(s):

Wenjun Zhu ◽

XiaoXiao Ling ◽

Wenru Shang ◽

Jiayan Huang

Keyword(s):

Genetic Counseling ◽

Pregnant Women ◽

Insurance Coverage ◽

Prenatal Testing ◽

Chi Square ◽

Aneuploidy Screening ◽

Logistic Regression Models ◽

Non Invasive ◽

Payment Schemes ◽

Chi Square Test

Non-invasive prenatal testing (NIPT) for aneuploidy screening has been widely applied across China, and costs can affect Chinese pregnant women’s choices. This study aims to assess the knowledge, attitude, practices (KAP) and satisfaction regarding NIPT among pregnant women in China, and to further explore the relationship between payment schemes and women’s acceptability of and satisfaction with NIPT. A questionnaire survey was performed in Shenzhen and Zhengzhou, China, which separately applied “insurance coverage” and “out-of-pocket” payment scheme for NIPT. The major differences between the two cities were compared using chi-square test, Wilcoxon rank sum test, and propensity score matched analysis. Logistic regression models were applied to explore predictors for women’s acceptability and satisfaction. Compared with Zhengzhou participants, a higher proportion of Shenzhen women had heard of NIPT (87.30% vs. 64.03%), were willing to receive NIPT (91.80% vs. 80.43%) and had taken NIPT (83.12% vs. 54.54%), while their satisfaction level was lower. Having NIPT-related knowledge was associated with higher acceptability, and receiving genetic counseling helped to improve satisfaction. Besides, women with higher annual household incomes were more likely to take and be satisfied with NIPT. In conclusion, more attention should be paid to health education, subsidies for NIPT, and genetic counseling.

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Quality of life in breast cancer sufferers

International Journal of Health Care Quality Assurance ◽

10.1108/ijhcqa-05-2015-0057 ◽

2016 ◽

Vol 29 (7) ◽

pp. 721-732 ◽

Cited By ~ 1

Author(s):

Ahmed Essmat Shouman ◽

Nahla Fawzy Abou El Ezz ◽

Nivine Gado ◽

Amal Mahmoud Ibrahim Goda

Keyword(s):

Breast Cancer ◽

Quality Of Life ◽

Family Income ◽

Early Stage ◽

Functional Domain ◽

Related Factors ◽

Specific Patient ◽

Content Type ◽

Factors Affecting

Purpose – The purpose of this paper is to measure health-related quality of life (QOL) among patients with early stage cancer breast under curative treatment at department of oncology and nuclear medicine at Ain Shams University Hospitals. Identify factors affecting QOL among these patients. Design/methodology/approach – A cross-sectional study measured QOL among early stage female breast cancer (BC) patients and determined the main factors affecting their QOL. Three interviewer administered questionnaires were used. Findings – The physical domain mostly affected in BC patients and the functional domain least. Socio-demographic factors that significantly affected BC patients QOL scores were patient age, education, having children and family income. Specific patient characteristics include caregiver presence – a factor that affected different QOL scores. Age at diagnosis, affection in the side of the predominant hand, post-operative chemotherapy and difficulty in obtaining the medication were the disease-related factors that affected QOL scores. Originality/value – The final model predicting QOL for early stage female BC patients included age, education and difficulty in obtaining the medication as determinants for total QOL score. Carer presence was the specific patient characteristic that affected different QOL scores.

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PP350 Study On The Awareness, Willingness To Pay And Satisfaction With Non-Invasive Prenatal Testing Among Pregnant Women

International Journal of Technology Assessment in Health Care ◽

10.1017/s0266462320001622 ◽

2020 ◽

Vol 36 (S1) ◽

pp. 30-30

Author(s):

Changjia Fan ◽

Wenru Shang ◽

Jiayan Huang ◽

Yang Wan

Keyword(s):

Willingness To Pay ◽

Pregnant Women ◽

Birth Defects ◽

Financial Burden ◽

Down's Syndrome ◽

Prenatal Testing ◽

Down’S Syndrome ◽

Anhui Province ◽

Screening Methods ◽

Non Invasive

IntroductionBirth defects seriously affect children's survival and quality of life and bring great suffering and financial burden to children and their families. Down's syndrome is one of the most common birth defects. Compared with traditional serological screening methods, non-invasive prenatal testing (NIPT) has higher sensitivity and specificity in the screening of Down's syndrome. In April 2017, the People's Government of Fuyang City, Anhui Province launched a NIPT free screening program. From the perspective of the beneficiary, this research investigated the awareness, willingness to pay and satisfaction of pregnant women in Fuyang City, Anhui Province, to better improve the use of NIPT.MethodsA questionnaire survey was conducted on 1,221 pregnant women who experienced this program in Fuyang City, Anhui Province. Multivariate ordered logistic regression models were established to analyze the factors affecting the satisfaction of NIPT.ResultsA total of 1,217 valid questionnaires were collected. Research indicated 82.5 percent knew about NIPT and 81.9 percent were willing to pay personally when its price was CNY 800 (USD 113.88) per test among pregnant women. The satisfaction of pregnant women with NIPT showed that the waiting time for test results was relatively low (4.5 out of 5 points) compared with other aspects of satisfaction. The higher the education level of the pregnant women, the lower their satisfaction with NIPT.ConclusionsIt is necessary to pay attention to the characteristics of education and to improve the awareness and satisfaction of NIPT among pregnant women. Meanwhile, if it is affordable enough for NIPT services to be provided by the government, this mode should be promoted. In conjunction with the willingness to pay of pregnant women, NIPT payment methods should be developed appropriately.

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Follow-up in Patients With Non-invasive Prenatal Screening Failures: A Reflection on the Choice of Further Prenatal Diagnosis

Frontiers in Genetics ◽

10.3389/fgene.2021.666648 ◽

2021 ◽

Vol 12 ◽

Author(s):

Sha Liu ◽

Hongqian Liu ◽

Jianlong Liu ◽

Ting Bai ◽

Xiaosha Jing ◽

...

Keyword(s):

Genetic Counseling ◽

Prenatal Diagnosis ◽

Pregnant Women ◽

Prenatal Screening ◽

Chromosomal Abnormalities ◽

Detection Methods ◽

Chromosomal Microarray ◽

Chromosomal Microarray Analysis ◽

Non Invasive

BackgroundOur aim was to provide a theoretical basis for clinicians to conduct genetic counseling and choose further prenatal diagnosis methods for pregnant women who failed non-invasive prenatal screening (NIPS).MethodsA retrospective analysis was performed on pregnant women who had failed NIPS tests.ResultsAmong the 123,291 samples, 394 pregnant women did not obtain valid results due to test failures. A total of 378 pregnant women were available for follow-up, while 16 patients were lost to follow-up. Of these 378, 135 pregnant women chose further prenatal diagnosis through amniocentesis, and one case of dysplasia was recalled for postpartum chromosome testing. The incidence rate of congenital chromosomal abnormalities in those who failed the NIPS was 3.97% (15/378), which was higher than that of the chromosomal abnormalities in the common population (1.8%). Among the pregnant women who received prenatal diagnosis, the positive rates of chromosomal abnormalities in the chromosomal microarray analysis/copy number variation sequencing (CMA/CNV-seq) group and in the karyotyping group were 15.28 and 4.76%, respectively.ConclusionPrenatal diagnosis should be strongly recommended in posttest genetic counseling for pregnant women with NIPS failures. Further, high-resolution detection methods should be recommended for additional prenatal diagnoses.

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The Value of Non-Invasive Prenatal Testing in the Diagnosis of Birth Defects: Insights from a Large Multicentre Study in Southern China

10.21203/rs.3.rs-778395/v1 ◽

2021 ◽

Author(s):

Meiying Cai ◽

Na Lin ◽

Xuemei Chen ◽

Ying Li ◽

Min Lin ◽

...

Keyword(s):

Multicentre Study ◽

Pregnant Women ◽

Chromosomal Abnormalities ◽

Southern China ◽

Prenatal Testing ◽

Copy Number Variations ◽

Trisomy 13 ◽

Detection Rates ◽

Non Invasive ◽

Large Multicentre Study

Abstract Non-invasive prenatal testing (NIPT) is a fast, safe, and non-disruptive diagnostic method. At present, few studies have evaluated the screening efficiency of NIPT positive predictive value (PPV) in study subjects. Here, the results of NIPT in pregnant women were retrospectively analysed, and the detection rate, PPV and follow-up data were evaluated to determine its clinical value. A large multicentre study was conducted involving 52,855 pregnant women who received NIPT. Based on gestational age, amniotic fluid or umbilical cord blood were extracted for simultaneous karyotype and chromosome microarray analysis (CMA) in NIPT-positive patients. Among the 52,855 cases, 754 were NIPT-positive, with a positivity rate of 1.4%. Karyotype analysis and/or CMA confirmed 323 cases of chromosomal abnormalities, with a PPV of 45.1%. PPV of Trisomy 21 (T21), Trisomy 18 (T18), Trisomy 13 (T13), sex chromosomal aneuploidies (SCA) and copy number variations (CNV) were 78.9%, 35.3%, 22.2%, 36.9% and 32.9%, respectively. The PPV of T21, T18, and T13 increased with age whereas, the PPV of SCA and CNVs had little correlation with age. The PPV was significantly high in patients with advanced age along with an abnormal ultrasound.NIPT had a high PPV for T21, and a low PPV for T13 and T18, while screening for SCA and CNVs showed clinical significance. However, in case of NIPT screening for SCA and CNVs, simultaneous karyotype and CMA should be performed to increase the detection rates. Interventional prenatal diagnosis is still required in NIPT-positive cases to avoid false positives or unnecessary termination of pregnancy.

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