Dataset Information

Preferences for prenatal tests for Down syndrome: an international comparison of the views of pregnant women and health professionals.

ABSTRACT: Non-invasive prenatal testing is increasingly available worldwide and stakeholder viewpoints are essential to guide implementation. Here we compare the preferences of women and health professionals from nine different countries towards attributes of non-invasive and invasive prenatal tests for Down syndrome. A discrete choice experiment was used to obtain participants' stated preference for prenatal tests that varied according to four attributes: accuracy, time of test, risk of miscarriage, and type of information. Pregnant women and health professionals were recruited from Canada, Denmark, Iceland, Israel, Italy, the Netherlands, Portugal, Singapore, and the United Kingdom. A total of 2666 women's and 1245 health professionals' questionnaires were included in the analysis. Differences in preferences were seen between women and health professionals within and between countries. Overall, women placed greater emphasis on test safety and comprehensive information than health professionals, who emphasised accuracy and early testing. Differences between women's and health professionals' preferences are marked between countries. Varied approaches to implementation and service delivery are therefore needed and individual countries should develop guidelines appropriate for their own social and screening contexts.

SUBMITTER: Hill M

PROVIDER: S-EPMC5070900 | biostudies-literature | 2016 Jul

REPOSITORIES: biostudies-literature

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Preferences for prenatal tests for Down syndrome: an international comparison of the views of pregnant women and health professionals.

Hill Melissa M Johnson Jo-Ann JA Langlois Sylvie S Lee Hyun H Winsor Stephanie S Dineley Brigid B Horniachek Marisa M Lalatta Faustina F Ronzoni Luisa L Barrett Angela N AN Advani Henna V HV Choolani Mahesh M Rabinowitz Ron R Pajkrt Eva E van Schendel Rachèl V RV Henneman Lidewij L Rommers Wieke W Bilardo Caterina M CM Rendeiro Paula P Ribeiro Maria João MJ Rocha José J Bay Lund Ida Charlotte IC Petersen Olav B OB Becher Naja N Vogel Ida I Stefánsdottir Vigdis V Ingvarsdottir Sigrun S Gottfredsdottir Helga H Morris Stephen S Chitty Lyn S LS

European journal of human genetics : EJHG 20151118 7

Non-invasive prenatal testing is increasingly available worldwide and stakeholder viewpoints are essential to guide implementation. Here we compare the preferences of women and health professionals from nine different countries towards attributes of non-invasive and invasive prenatal tests for Down syndrome. A discrete choice experiment was used to obtain participants' stated preference for prenatal tests that varied according to four attributes: accuracy, time of test, risk of miscarriage, and ...[more]

PMID: 26577044

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Project description:ObjectivesNoninvasive prenatal testing (NIPT) to screen for fetal aneuploidies by analysing cell-free DNA in maternal plasma is available to pregnant women worldwide. In the future, the scope of NIPT could potentially be expanded to the prediction of adverse pregnancy outcomes. The objective of this study was to assess and compare the preferences of pregnant women and obstetric healthcare professionals on this new test purpose of NIPT.DesignA discrete choice experiment was designed to assess participants' preferences on the use of NIPT to predict adverse pregnancy outcomes regarding three attributes on test characteristics: test accuracy rate, unnecessary intervention rate and false reassurance rate. A questionnaire assessed general attitudes towards using noninvasive prenatal testing to predict adverse pregnancy outcomes.SettingDutch prenatal healthcare system.ParticipantsPregnant women with singleton pregnancies and obstetric healthcare professionals.ResultsIn total, 1580 pregnant women and 308 obstetric healthcare professionals participated in the discrete choice experiment. Higher test accuracy, fewer unnecessary interventions and less false reassurance all had a statistically significant (p<0.05) impact on the preference for a test. For pregnant women, the most important test characteristic when choosing a preferred test was the test accuracy rate, while for obstetric healthcare professionals, the most important test characteristic was the unnecessary intervention rate. The false reassurance rate was the least important test characteristic for both groups. Overall, 74% (n=1181) of pregnant women (strongly) agreed that NIPT to predict adverse pregnancy outcomes should be offered to pregnant women compared with 49% (n=151) of obstetric healthcare professionals.ConclusionsMost pregnant women have a positive attitude towards using NIPT to predict adverse pregnancy outcomes compared with slightly less than half of the obstetric healthcare professionals. Pregnant women prioritise a prognostic test with higher test accuracy, while obstetric healthcare professionals prioritise a test that results in fewer unnecessary interventions.

Project description:Pregnant Hispanic women are underserved with their needs for genetic counseling, despite birth defects remaining the leading cause of infant death in the United States. We present the qualitative findings of a study to understand knowledge and perceptions of prenatal testing in a sample of hard-to-reach underrepresented Hispanic pregnant women in South Texas. The sample for this study was 10 Hispanic pregnant women who were recruited from a high-risk prenatal clinic in South Texas in 2019. The semi-structured interview questions were created based on the researchers' clinical experiences with this population and were designed to examine knowledge and perceptions of participants toward prenatal testing. Analysis of the qualitative data yielded several themes related to prenatal testing: (a) knowledge, (b) confusion, (c) partner's and support persons' opinions, (d) information sharing from providers, (e) psychological benefits, (f) preparation for baby, (g) obstacles, (h) religious influence, and (i) educational tools to assist with understanding. Women's understanding and knowledge of prenatal testing was limited, specifically regarding its purpose, how it works, the benefits, and why it was recommended by their provider. Lack of clarity about why they should take the test and its risks for them and their babies was perceived as something that could impede their acceptance of prenatal testing. All participants agreed that healthcare providers should share more information about prenatal testing in a way that uses 'everyday language' so that they can understand it better. All respondents mentioned that prenatal testing provides information about their baby's health conditions, alleviates their stress and concerns, and psychologically prepares them and their family for what is to come. Identifying ways to increase culturally appropriate education delivered by genetic counselors such as through the adoption of telemedicine and mobile technology can help fill the gap for this underserved population.

Project description:IntroductionSouth Africa lacks services to detect and address alcohol use during pregnancy, particularly outside of health-care facilities. This study aimed to explore pregnant women and healthcare providers' perceptions of the acceptability, feasibility and appeal of a community-based counselling programme for pregnant women with alcohol problems.MethodsTwenty-eight in-depth interviews with pregnant women who drink, Community Health Workers (CHWs) and antenatal service providers were conducted. Transcribed interviews were analyzed thematically using a combined deductive and inductive approach.ResultsWomen reported feeling uncomfortable seeking help for their alcohol use at antenatal clinics, limiting usefulness of current support services. All stakeholders perceived a community-based intervention to be acceptable and feasible as it could be integrated with other CHW-delivered services. Participants thought an intervention should facilitate early linkage to antenatal services and should include partners or family members. The feasibility of an intervention may depend on the relationship between CHWs and clinic-based antenatal staff, and their relationships with pregnant women. Clinic and community challenges to implementation were raised. Clinic-level challenges included shortage of space, staff capacity, high number of pregnant women, long waiting times, financial burden of having to travel to a clinic, lack of comfort and privacy and staff attitudes. Community-level challenges included crime, lack of privacy, lack of attention given competing interests in the home, fear due to abuse, and stigma and discrimination from other community members. Suggestions for overcoming these challenges were provided.ConclusionFindings provide essential information to facilitate the adaptation of a community-based alcohol counselling programme for greater acceptability, feasibility and cultural appropriateness for the South African context. Intensive training, supervision and support is required to ensure the programme is delivered as planned.

Project description:Aims: To explore healthcare professionals' views about the training and support needed to rollout closed-loop technology to pregnant women with type 1 diabetes. Methods: We interviewed (n = 19) healthcare professionals who supported pregnant women using CamAPS FX closed-loop during the Automated insulin Delivery Amongst Pregnant women with Type 1 diabetes (AiDAPT) trial. Data were analyzed descriptively. An online workshop involving (n = 15) trial team members was used to inform recommendations. Ethics approvals were obtained in conjunction with those for the wider trial. Results: Interviewees expressed enthusiasm for a national rollout of closed-loop, but anticipated various challenges, some specific to use during pregnancy. These included variations in insulin pump and continuous glucose monitoring expertise and difficulties embedding and retaining key skills, due to the relatively small numbers of pregnant women using closed-loop. Inexperienced staff also highlighted difficulties interpreting data downloads. To support rollout, interviewees recommended providing expert initial advice training, delivered by device manufacturers together with online training resources and specific checklists for different systems. They also highlighted a need for 24 h technical support, especially when supporting technology naive women after first transitioning onto closed-loop in early pregnancy. They further recommended providing case-based meetings and mentorship for inexperienced colleagues, including support interpreting data downloads. Interviewees were optimistic that if healthcare professionals received training and support, their long-term workloads could be reduced because closed-loop lessened women's need for glycemic management input, especially in later pregnancy. Conclusions: Interviewees identified challenges and opportunities to rolling-out closed-loop and provided practical suggestions to upskill inexperienced staff supporting pregnant women using closed-loop. A key priority will be to determine how best to develop mentorship services to support inexperienced staff delivering closed-loop. Clinical Trials Registration: NCT04938557.

Dataset Information

Preferences for prenatal tests for Down syndrome: an international comparison of the views of pregnant women and health professionals.

Publications

Preferences for prenatal tests for Down syndrome: an international comparison of the views of pregnant women and health professionals.

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