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Improving women's knowledge about prenatal screening in the era of non-invasive prenatal testing for Down syndrome - development and acceptability of a low literacy decision aid.

ABSTRACT: BACKGROUND:Access to information about prenatal screening is important particularly in light of new techniques such as non-invasive prenatal testing (NIPT). This study aimed to develop and examine the acceptability of a low literacy decision aid (DA) about Down syndrome screening among pregnant women with varying education levels and GPs. METHODS:We developed a DA booklet providing information about first-trimester combined testing, maternal serum screening, and NIPT. GPs and women participated in a telephone interview to examine the acceptability of the DA and measure screening knowledge before and after reading the DA. The knowledge measure was designed to assess whether women had understood the gist of the information presented in the decision aid. It comprised conceptual questions (e.g. screening tells you the chance of having a baby with Down syndrome) and numeric questions (e.g. the accuracy of different screening tests). RESULTS:Twenty-nine women and 18 GPs participated. Regardless of education level, most women found the booklet 'very' clearly presented (n?=?22, 76%), and 'very' informative (n?=?23, 80%). Overall, women's conceptual and numeric knowledge improved after exposure to the DA, from 4% having adequate knowledge to 69%. Women's knowledge of NIPT also improved after receiving the decision aid, irrespective of education. Most GPs found it 'very' clearly presented (n?=?13, 72%), and that it would 'very much' facilitate decision-making (n?=?16, 89%). CONCLUSIONS:The DA was found to be acceptable to women as well as GPs. A comprehensive evaluation of the efficacy of the decision aid compared to standard information is an important next step. Strategies are needed on how to implement the tool in practice.

SUBMITTER: Smith SK

PROVIDER: S-EPMC6296052 | biostudies-literature | 2018 Dec

REPOSITORIES: biostudies-literature

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Improving women's knowledge about prenatal screening in the era of non-invasive prenatal testing for Down syndrome - development and acceptability of a low literacy decision aid.

Smith Sian Karen SK Cai Antonia A Wong Michelle M Sousa Mariana S MS Peate Michelle M Welsh Alec A Meiser Bettina B Kaur Rajneesh R Halliday Jane J Lewis Sharon S Trevena Lyndal L Yanes Tatiane T Barlow-Stewart Kristine K Barclay Margot M

BMC pregnancy and childbirth 20181217 1

<h4>Background</h4>Access to information about prenatal screening is important particularly in light of new techniques such as non-invasive prenatal testing (NIPT). This study aimed to develop and examine the acceptability of a low literacy decision aid (DA) about Down syndrome screening among pregnant women with varying education levels and GPs.<h4>Methods</h4>We developed a DA booklet providing information about first-trimester combined testing, maternal serum screening, and NIPT. GPs and wome ...[more]

PMID: 30558569

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Project description:BackgroundDown syndrome is a common chromosomal abnormality and prenatal screening can inform parents of the risk of their baby having Down syndrome. Little research has examined how decisions regarding both Down syndrome screening as well as diagnosis are made among women who are currently pregnant and how their decisions are influenced by their social contexts, specifically family and social media, using mixed methods. The study was to test the validity and reliability of a scale that measures pregnant women's attitudes and decision-making concerning prenatal Down syndrome screening and diagnosis in urban areas of Taiwan.MethodsWe developed an item pool based on a literature review and in-depth interviews with 30 pregnant women recruited at two district hospitals in urban areas. The item pool was reviewed by a panel of experts and then administered to 300 women who had been pregnant for less than 24 weeks and had not received the Down syndrome screening tests. We used item analysis and exploratory factor analysis to validate the scale and test its reliability.ResultsThe initial item pool had 54 items. After the expert review, three items were deleted. After the item analysis, 16 additional items were deleted. Exploratory factor analysis of the remaining items revealed four factors labeled - "Attitudes towards Down syndrome and Screening Tests," "Important others' Attitudes towards Down Syndrome," "Influence of Important Others on Decision-Making," and "Influence of Social Media on Decision-Making" - and 16 of the remaining items had satisfactory loadings on those factors, explaining 72.0% of the total variance. The Cronbach's α values of the dimensions ranged between 0.75 and 0.90, demonstrating satisfactory internal reliability.ConclusionsThe scale has satisfactory validity and reliability, and can be used to understand pregnant women's attitudes and decision-making regarding Down syndrome screening and diagnosis, and to help design tailored consultations for pregnant women in clinical settings.

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:Risk stratification using genetic and other types of personal information could improve current best available approaches to ovarian cancer risk reduction, improving identification of women at increased risk of ovarian cancer and reducing unnecessary interventions for women at lower risk. Amounts of information given to women may influence key informed decision-related outcomes, e.g. knowledge. The primary aim of this study was to compare informed decision-related outcomes between women given one of two versions (gist vs. extended) of a decision aid about stratified ovarian cancer risk-management.This was an experimental survey study comparing the effects of brief (gist) information with lengthier, more detailed (extended) information on cognitions relevant to informed decision-making about participating in risk-stratified ovarian cancer screening. Women with no personal history of ovarian cancer were recruited through an online survey company and randomised to view the gist (n?=?512) or extended (n?=?519) version of a website-based decision aid and completed an online survey. Primary outcomes were knowledge and intentions. Secondary outcomes included attitudes (values) and decisional conflict.There were no significant differences between the gist and extended conditions in knowledge about ovarian cancer (time*group interaction: F?=?0.20, p?=?0.66) or intention to participate in ovarian cancer screening based on genetic risk assessment (t(1029)?=?0.43, p?=?0.67). There were also no between-groups differences in secondary outcomes. In the sample overall (n?=?1031), knowledge about ovarian cancer increased from before to after exposure to the decision aid (from 5.71 to 6.77 out of a possible 10: t?=?19.04, p?<?0.001), and 74% of participants said that they would participate in ovarian cancer screening based on genetic risk assessment.No differences in knowledge or intentions were found between women who viewed the gist version and women who viewed the extended version of a decision aid about risk-stratified ovarian cancer screening. Knowledge increased for women in both decision aid groups. Further research is needed to determine the ideal volume and type of content for decision aids about stratified ovarian cancer risk-management.This study was registered with the ISRCTN registry; registration number: ISRCTN48627877 .

Project description:BackgroundOur team has developed a decision aid to help pregnant women and their partners make informed decisions about Down syndrome prenatal screening. However, the decision aid is not yet widely available in Quebec's prenatal care pathways.ObjectiveWe sought to identify knowledge translation strategies and develop an implementation plan to promote the use of the decision aid in prenatal care services in Quebec, Canada.MethodsGuided by the Knowledge-to-Action Framework and the Theoretical Domains Framework, we performed a synthesis of our research (11 publications) on prenatal screening in Quebec and on the decision aid. Two authors independently reviewed the 11 articles, extracted information, and mapped it onto the Knowledge-to-Action framework. Using participatory action research methods, we then recruited pregnant women, health professionals, managers of three prenatal care services, and researchers to (a) identify the different clinical pathways followed by pregnant women and (b) select knowledge translation strategies for a clinical implementation plan. Then, based on all the information gathered, the authors established a consensus on strategies to include in the plan.ResultsOur knowledge synthesis showed that pregnant women and their partners are not sufficiently involved in the decision-making process about prenatal screening and that there are numerous barriers and facilitators of the use of the decision aid in clinical practice (e.g., low intention to use it among health providers). Using a participatory action approach, we met with five pregnant women, three managers, and six health professionals. They informed us about three of Quebec's prenatal care pathways and helped us identify 20 knowledge translation strategies (e.g., nurse discusses decision aid with women before they meet the doctor) to include in a clinical implementation plan. The research team reached a consensus about the clinical plan and also about broader organizational strategies, such as training healthcare providers in the use of the decision aid, monitoring its impact (e.g., measure decisional conflict) and sustaining its use (e.g., engage key stakeholders in the implementation process).ConclusionNext steps are to pilot our implementation plan while further identifying global strategies that target institutional, policy, and systemic supports for implementation.

Project description:Background. While nerve and tendon transfer surgery can restore upper extremity function and independence after midcervical spinal cord injury, few individuals (∼14%) undergo surgery. There is limited information regarding these complex and time-sensitive treatment options. Patient decision aids (PtDAs) convey complex health information and help individuals make informed, preference-consistent choices. The purpose of this study is to evaluate a newly created PtDA for people with spinal cord injury who are considering options to optimize upper extremity function. Methods. The PtDA was developed by our multidisciplinary group based on clinical evidence and the Ottawa Decision Support Framework. A prospective pilot study enrolled adults with midcervical spinal cord injury to evaluate the PtDA. Participants completed surveys about knowledge and decisional conflict before and after viewing the PtDA. Acceptability measures and suggestions for further improvement were also solicited. Results. Forty-two individuals were enrolled and completed study procedures. Participants had a 20% increase in knowledge after using the PtDA (P < 0.001). The number of participants experiencing decisional conflict decreased after viewing the PtDA (33 v. 18, P = 0.001). Acceptability was high. To improve the PtDA, participants suggested adding details about specific surgeries and outcomes. Limitations. Due to the COVID-19 pandemic, we used an entirely virtual study methodology and recruited participants from national networks and organizations. Most participants were older than the general population with a new spinal cord injury and may have different injury causes than typical surgical candidates. Conclusions. A de novo PtDA improved knowledge of treatment options and reduced decisional conflict about reconstructive surgery among people with cervical spinal cord injury. Future work should explore PtDA use for improving knowledge and decisional conflict in the nonresearch, clinical setting.HighlightsPeople with cervical spinal cord injury prioritize gaining upper extremity function after injury, but few individuals receive information about treatment options.A newly created patient decision aid (PtDA) provides information about recovery after spinal cord injury and the role of traditional tendon and newer nerve transfer surgery to improve upper extremity upper extremity function.The PtDA improved knowledge and decreased decisional conflict in this pilot study.Future work should focus on studying dissemination and implementation of the ptDA into clinical practice.

Dataset Information

Improving women's knowledge about prenatal screening in the era of non-invasive prenatal testing for Down syndrome - development and acceptability of a low literacy decision aid.

Publications

Improving women's knowledge about prenatal screening in the era of non-invasive prenatal testing for Down syndrome - development and acceptability of a low literacy decision aid.

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