Decision Making Following a Prenatal Diagnosis of Down Syndrome: An Integrative Review
ABSTRACT Prenatal screening for Down syndrome (DS) is a routine part of prenatal care in many countries, and there is growing interest in the choices women make following a prenatal diagnosis of DS. This review describes what is known about actual and hypothetical decision making following a prenatal diagnosis of DS and adds understanding about the factors that influence women's decision making.
A search of empirical studies was conducted through electronic databases, major journals, and reference lists that were published in English between January 1999 and September 2010. Inclusion criteria were that the research explored attitudes toward continuation of pregnancy or induced abortion for DS and included at least 1 variable that explored factors influencing women's decision making following a prenatal diagnosis of DS. Studies that did not specify DS, unpublished manuscripts, review articles, and book chapters were excluded.
A total of 11 studies were identified that met the inclusion criteria. The decision to undergo an induced abortion varied depending on whether participants were prospective parents recruited from the general population (23%-33% would terminate), pregnant women at increased risk for having a child with DS (46%-86% would terminate), or women who received a positive diagnosis of DS during the prenatal period (89%-97% terminated). Multiple factors influence women's decision making following a diagnosis of DS, including demographic factors such as religion, maternal age, gestational age, number of existing children, and history of induced abortion. Psychosocial factors including perceived parenting burden/reward, quality of life for a child with DS, attitudes toward and comfort with individuals with disabilities, and support from others also are important influences.
Multiple factors influence the decisions pregnant women make following the diagnosis of fetal DS. Therefore, it is critical that health care providers who work with pregnant women are aware of these factors.
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ABSTRACT: This study seeks to inform clinical application of cell-free fetal DNA (cffDNA) screening as a novel method for prenatal trisomy detection by investigating public attitudes towards this technology and demographic and experiential characteristics related to these attitudes. Two versions of a 25-item survey assessing interest in cffDNA and existing first-trimester combined screening for either trisomy 13 and 18 or trisomy 21 were distributed among 3,164 members of the United States public. Logistic regression was performed to determine variables predictive of interest in screening options. Approximately 47 % of respondents expressed an interest in cffDNA screening for trisomy 13, 18, and 21, with a majority interested in cffDNA screening as a stand-alone technique. A significantly greater percent would consider termination of pregnancy following a diagnosis of trisomy 13 or 18 (52 %) over one of trisomy 21 (44 %). Willingness to consider abortion of an affected pregnancy was the strongest correlate to interest in both cffDNA and first-trimester combined screening, although markedly more respondents expressed an interest in some form of screening (69 % and 71 %, respectively) than would consider termination. Greater educational attainment, higher income, and insurance coverage predicted interest in cffDNA screening; stronger religious identification also corresponded to decreased interest. Prior experience with disability and genetic testing was associated with increased interest in cffDNA screening. Several of these factors, in addition to advanced age and Asian race, were, in turn, predictive of respondents' increased willingness to consider post-diagnosis termination of pregnancy. In conclusion, divergent attitudes towards cffDNA screening-and prenatal options more generally - appear correlated with individual socioeconomic and religious backgrounds and experiences with disability and genetic testing. Clinical implementation and counseling for novel prenatal technologies should take these diverse stakeholder values into consideration.Journal of Genetic Counseling 04/2014; 23(6). DOI:10.1007/s10897-014-9704-9 · 1.75 Impact Factor
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ABSTRACT: The aim of this study was to explore a deeper insight into experiences of Turkish mothers living with/diagnosed with Down syndrome (DS) baby. Individual and audiotaped interviews were carried out with 11 women after amniocentesis in Karaman city of Turkey between August 2012 and February 2013. Transcribed semistructured interviews were qualitatively and analyzed using a thematic analysis approach to code and categorize emerging themes. Three principal themes emerged from the study: mothers' emotional reaction after diagnosed DS, mother and healthcare professional interactions, and mother's coping with diagnosed DS. Understanding the experiences of women living with/diagnosed with DS baby enables nurses to devise appropriate strategies to provide better support at every stage and thus helping them to cope with daily life. AMAÇ: Bu çalışmanın amacı gebeliğinde Down sendromu tanısı konmuş kadınların derin bir bakışla deneyimlerini saptamaktır. YÖNTEM: Çalışma Karaman'da Ağustos 2012 ve Şubat 2013 tarihleri arasında yapılmıştır. Yarı yapılandırılmış görüşme formu ile kişiye özel ses kayıtları alınarak yapılan çalışmada tematik analiz kullanılarak veriler kodlanmış ve kategorize edilmiştir. Çalışma sonunda sptanan temalar: tanı sonrası kadınların duygusal durumları, anne- sağlık personeli ilişkisi, tanı sonrası başetme yollarıdır. SONUÇLAR: Kadınların hislerini anlamak, bu sürecin her aşamasında hemşirelerin daha iyi destek vermek için uygun stratejileri geliştirmelerini sağlayarak, onların günlük yaşamlarını kolaylaştırılabilir.03/2014; 25(3). DOI:10.1111/2047-3095.12026
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ABSTRACT: Background The first- and second-trimester screening for trisomy 21 (T21) are reimbursed for all pregnant women in Belgium. Using a cut-off risk of 1:300 for T21, about 5% of all pregnant women are referred for definitive prenatal diagnosis using an invasive test, at a sensitivity of (only) 72.5%. The sensitivity and specificity of the non-invasive prenatal test (NIPT) are over 99% but come at a cost of €460 (£373) per test. The objective is to estimate the consequences of introducing NIPT for the detection of T21. Methods A cost-consequences analysis was performed presenting the impact on benefits, harms and costs. Context-specific real-world information was available to set up a model reflecting the current screening situation in Belgium. This model was used to construct the second and first line NIPT screening scenarios applying information from the literature on NIPT's test accuracy. Results Introducing NIPT in the first or second line reduces harm by decreasing the number of procedure-related miscarriages after invasive testing. In contrast with NIPT in the second line, offering NIPT in the first line additionally will miss fewer cases of T21 due to less false-negative test results. The introduction of NIPT in the second line results in cost savings, which is not true for NIPT at the current price in the first line. If NIPT is offered to all pregnant women, the price should be lowered to about €150 to keep the screening cost per T21 diagnosis constant. Conclusions In Belgium, the introduction and reimbursement of NIPT as a second line triage test significantly reduces procedure-related miscarriages without increasing the short-term screening costs. Offering and reimbursing NIPT in the first line to all pregnant women is preferred in the long term, as it would, in addition, miss fewer cases of T21. However, taking into account the government's limited resources for universal reimbursement, the price of NIPT should first be lowered substantially before this can be realised.BMJ Open 11/2014; 4(11):e005922. DOI:10.1136/bmjopen-2014-005922 · 2.06 Impact Factor