Multisite assessment of the impact of a prenatal testing educational App on patient knowledge and preparedness for prenatal testing decision making.
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SUBMITTER: Winters P
PROVIDER: S-EPMC9314500 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundNon-invasive prenatal testing (NIPT) allows women to access genetic information about their fetuses without the physical risk inherent to prior testing methods. The advent of NIPT technology has led to concerns regarding the quality and process of informed consent, as a view of NIPT as "routine" could impair women's considered approach when choosing to undergo testing. Prior studies evaluating NIPT decision-making have focused on the clinical encounter as the primary environment for acquisition of biomedical information and decision formation. While important, this conceptualization fails to consider how additional sources of knowledge, including embodied and empathetic experiential knowledge, shape perceptions of risk and the societal use of NIPT.MethodsIn order to address this issue, qualitative, semi-structured interviews with 25 women who had been offered NIPT were performed. Participants came from a well-resourced, rural setting near a major academic medical center in the US. Women were categorized by NIPT use/non-use as well as whether their described decision-making process was perceived as making a significant decision requiring contemplation ("significant") versus a rapid or immediate decision ("routinized"). A constructivist general inductive approach was used to explore themes in the data, develop a framework of NIPT decision-making, and compare the perceptions of women with differential decision-making processes and outcomes.ResultsA framework for decision-making regarding NIPT was developed based on three emergent factors: perceptions of the societal use of NIPT, expected emotional impact of genetic information, and perceived utility of genetic information. Analysis revealed that perceptions of widespread use of NIPT, pervasive societal narratives of NIPT use as "forward-thinking," and a perception of information as anxiety-relieving contributed to routinized uptake of NIPT. In contrast, women who displayed a lack of routinization expressed fewer stereotypes regarding the audience for NIPT and relied on communication with their social networks to consider how they might use the information provided by NIPT.ConclusionsThe findings of this study reveal the societal narratives and perceptions that shape differential decision-making regarding NIPT in the U.S.ContextUnderstanding and addressing these perceptions that influence NIPT decision-making, especially routinized uptake of NIPT, is important as the use and scope of this technology increases.
| S-EPMC7574418 | biostudies-literature
Project description:ObjectiveTo investigate women's preferred approach to prenatal genetic testing decision making and assess concordance between preference and experience.MethodsWe conducted a secondary analysis of data from two randomized trials conducted between 2007-2012. Survey items assessed participants' preferred approach to decision making and whether they experienced a preference-concordant decision process. Logistic regression estimated relationships between patient characteristics and these outcomes.Results56% of women preferred autonomous decision making, 39% preferred shared decision making, and 5% preferred a provider-driven approach. Only 57% experienced preference-concordant decision making. On bivariate analysis, black women, Spanish-speaking Latinas and women with less education were less likely to experience this outcome than white, more educated women. Numeracy and preferring a provider-driven approach fully mediated observed disparities in preference-concordant decision making for most participants, except for Spanish-speaking Latinas, who were still less likely to have experienced this outcome after accounting for these factors.ConclusionNumeracy, preference for provider-driven decision processes, and language barriers were key drivers of disparities in preference-concordant decision making.Practice implicationsGiven the values-sensitive and quantitative nature of prenatal testing decisions, nuanced counseling and interventions to address language barriers, numeracy gaps, and decision-making preferences are needed to tailor counseling to patient's backgrounds and desires.
| S-EPMC6421100 | biostudies-literature
Project description:OBJECTIVES:As shared decision making (SDM) has received increased attention as a method to improve the patient-centeredness of emergency department (ED) care, we sought to determine patients' desired level of involvement in medical decisions and their perceptions of potential barriers and facilitators to SDM in the ED. METHODS:We surveyed a cross-sectional sample of adult ED patients at three academic medical centers across the United States. The survey included 32 items regarding patient involvement in medical decisions including a modified Control Preference Scale and questions about barriers and facilitators to SDM in the ED. Items were developed and refined based on prior literature and qualitative interviews with ED patients. Research assistants administered the survey in person. RESULTS:Of 797 patients approached, 661 (83%) agreed to participate. Participants were 52% female, 45% white, and 30% Hispanic. The majority of respondents (85%-92%, depending on decision type) expressed a desire for some degree of involvement in decision making in the ED, while 8% to 15% preferred to leave decision making to their physician alone. Ninety-eight percent wanted to be involved with decisions when "something serious is going on." The majority of patients (94%) indicated that self-efficacy was not a barrier to SDM in the ED. However, most patients (55%) reported a tendency to defer to the physician's decision making during an ED visit, with about half reporting they would wait for a physician to ask them to be involved. CONCLUSION:We found that the majority of ED patients in our large, diverse sample wanted to be involved in medical decisions, especially in the case of a "serious" medical problem, and felt that they had the ability to do so. Nevertheless, many patients were unlikely to actively seek involvement and defaulted to allowing the physician to make decisions during the ED visit. After fully explaining the consequences of a decision, clinicians should make an effort to explicitly ascertain patients' desired level of involvement in decision making.
| S-EPMC6185792 | biostudies-literature
Project description:BackgroundNon-invasive prenatal testing (NIPT), which can screen for aneuploidies such as trisomy 21, is being implemented in several public healthcare systems across Europe. Comprehensive communication and information have been highlighted in the literature as important elements in supporting women's reproductive decision-making and addressing relevant ethical concerns such as routinisation. Countries such as England and France are adopting broadly similar implementation models, offering NIPT for pregnancies with high aneuploidy probability. However, we do not have a deeper understanding of how professionals' counselling values and practices may differ between these contexts.MethodsIn this paper, we explore how professionals in England and France support patient decision-making in the provision of NIPT and critically compare professional practices and values. We draw on data from semi-structured interviews with healthcare professionals.ResultsBoth English and French professionals emphasised values relating to patient choice and consent. However, understandings and application of these values into the practice of NIPT provision differed. English interviewees placed a stronger emphasis on interpreting and describing the process of counselling patients and clinical care through a "principle" lens. Their focus was on non-directiveness, standardisation, and the healthcare professional as "decision-facilitator" for patients. French interviewees described their approach through a "procedural" lens. Their focus was on formal consent, information, and the healthcare professional as "information-giver". Both English and French professionals indicated that insufficient resources were a key barrier in effectively translating their values into practice.ConclusionOur findings illustrate that supporting patient choice in the provision of NIPT may be held as an important value in common on a surface level, but can be understood and translated into practice in different ways. Our findings can guide further research and beneficially inform practice and policy around NIPT provision.
| S-EPMC10956335 | biostudies-literature
Project description:BackgroundDecisions about prenatal screening to assess the risk of genetic conditions such as Down syndrome are complex and should be well informed. Moreover, the number of available tests is increasing. Shared decision making (SDM) about testing could be facilitated by decision aids powered by mobile technology.ObjectiveIn this mixed methods study, we aim to (1) assess women's needs and preferences regarding using an app for considering prenatal screening, (2) develop a decision model using the analytical hierarchy process, and (3) develop an analytical app and assess its usability and usefulness.MethodsIn phase 1, we will assess the needs of 90 pregnant women and their partners (if available). We will identify eligible participants in 3 clinical sites (a midwife-led birthing center, a family practice clinic, and an obstetrician-led hospital-based clinic) in Quebec City and Montreal, Canada. Using semistructured interviews, we will assess participants' attitudes toward mobile apps for decision making about health, their current use of apps for health purposes, and their expectations of an app for prenatal testing decisions. Self-administered questionnaires will collect sociodemographic information, intentions to use an app for prenatal testing, and perceived importance of decision criteria. Qualitative data will be transcribed verbatim and analyzed thematically. Quantitative data will be analyzed using descriptive statistics and the analytic hierarchy process (AHP) method. In phase 2, we will develop a decision model using the AHP whereby users can assign relative importance to criteria when deciding between options. We will validate the model with potential users and a multidisciplinary team of patients, family physicians, primary care researchers, decision sciences experts, engineers, and experts in SDM, genetics, and bioethics. In phase 3, we will develop a prototype of the app using the results of the first 2 phases, pilot test its usefulness and usability among a sample of 15 pregnant women and their partners (if available), and improve it through 3 iterations. Data will be collected with a self-administered questionnaire. Results will be analyzed using descriptive statistics.ResultsRecruitment for phase 1 will begin in 2019. We expect results to be available in 2021.ConclusionsThis study will result in a validated analytical app that will provide pregnant women and their partners with up-to-date information about prenatal screening options and their risks and benefits. It will help them clarify their values and enable them to weigh the options to make informed choices consistent with their preferences and values before meeting face-to-face with their health care professional. The app will be easy to update with the latest information and will provide women with a user-friendly experience using their smartphones or tablets. This study and the resulting app will contribute to high-quality SDM between pregnant women and their health care team.International registered report identifier (irrid)DERR1-10.2196/13321.
| S-EPMC6913686 | biostudies-literature
Project description:OBJECTIVE:To evaluate the effectiveness of an educational video explaining aneuploidy testing. METHODS:This was a randomized controlled trial of women with singleton pregnancies having aneuploidy testing at less than 14 weeks of gestation from September 2016 to March 2017 at our prenatal ultrasound center. We developed an educational video on aneuploidy testing. Participants, stratified by age younger than or 35 years or older at estimated delivery date, were randomized to either view or not view the video before their ultrasonogram. Participants 35 years or older also met with a genetic counselor at the ultrasound appointment. All participants completed a survey assessing knowledge of genetic testing (score of 0-15) at baseline and after the appointment. The primary outcome was change in knowledge score after the intervention. A sample size of 23 per group (n=92) was planned for a total of 46 women younger than 35 years of age and 46 women aged 35 years or older. Data are presented as median (interquartile range). RESULTS:Of 104 eligible women who were approached, 92 were randomized. Forty women aged younger than 35 years and 41 women aged 35 years or older completed the study. Baseline characteristics were similar across groups. In women younger than 35 years, the video group had a significant improvement in knowledge score (+2.0 [1.0-5.0]) compared with the control group (0 [-1.0 to 1.0]; P=.01) and reported better understanding of the information compared with the control group (P<.001) with no change in patient satisfaction (P=.25). In women 35 years or older, change in knowledge score was similar for the video and control groups (P=.98) with no difference in self-reported understanding (P=.49) or patient satisfaction (P=.30). CONCLUSION:A patient-centered educational video explaining aneuploidy testing options improved knowledge and self-reported understanding of the information in women younger than 35 years with no change in patient satisfaction. No difference was seen for women 35 years or older, likely as a result of genetic counseling provided to these women.
| S-EPMC6059992 | biostudies-literature
Project description:BackgroundClinical guidelines for type 2 diabetes are a resource for providers to manage their patients and may help highlight specific areas in need of further education and training. We sought to determine how often guidelines are used and the relationship to physicians' diabetes-related knowledge and decision making.MethodsExisting users of electronic clinical support tools were invited to complete an online questionnaire. A knowledge score was calculated for five questions related to prevention of diabetes and treatment of its complications. We explored the association of clinical guideline use with diabetes-related knowledge and self-reported decision making using logistic regression models, adjusted for key covariates.ResultsOf 383 physicians completing the questionnaire, 53% reported using diabetes guidelines routinely. Mean diabetes knowledge score for guideline users (GU) was significantly higher than non-guideline users (NGU) (3.37 ± 0.072 vs. 2.76 ± 0.084; p < 0.001). GU were significantly more likely to report a good understanding of type 2 diabetes medications (OR = 2.99, 95% CI 1.95-4.61; p < 0.001). GU were less likely to report their unfamiliarity with insulin as an important barrier to early insulin use (OR = 0.41, 0.21-0.80; p = 0.007) and with pharmacologic options as a barrier to prescribing intensive multifactorial interventions (OR = 0.32, 0.17-0.58; p < 0.001). Associations remained significant after adjusting for physician specialty, practice volume and frequency diagnosing or treating diabetes patients.ConclusionsSignificant gaps exist in diabetes-related knowledge and decision making among practicing physicians, as highlighted by clinical guideline use. The development of educational and training strategies to address these needs may ultimately improve outcomes for patients with diabetes and should be investigated in the future.
| S-EPMC4162949 | biostudies-literature
Project description:BackgroundKnowledge translation (KT) interventions are attempts to change behavior in keeping with scientific evidence. While genetic tests are increasingly available to healthcare consumers in the clinic, evidence about their benefits is unclear and decisions about genetic testing are thus difficult for all parties.ObjectiveWe sought to identify KT interventions that involved decisions about genetic testing in the clinical context and to assess their effectiveness for improving decision making in terms of behavior change, increased knowledge and wellbeing.MethodsWe searched for trials assessing KT interventions in the context of genetic testing up to March 2014 in all systematic reviews (n = 153) published by two Cochrane review groups: Effective Practice and Organisation of Care (EPOC) and Consumers and Communication.ResultsWe retrieved 2473 unique trials of which we retained only 28 (1%). Two EPOC reviews yielded two trials of KT interventions: audit and feedback (n = 1) and educational outreach (n = 1). Both targeted health professionals and the KT intervention they assessed was found to be effective. Four Consumers and Communication reviews yielded 26 trials: decision aids (n = 15), communication of DNA-based disease risk estimates (n = 7), personalized risk communication (n = 3) and mobile phone messaging (n = 1). Among these, 25 trials targeted only health consumers or patients and the KT interventions were found to be effective in four trials, partly effective in seven, and ineffective in four. Lastly, only one trial targeted both physicians and patients and was found to be effective.ConclusionsMore research on the effectiveness of KT interventions regarding genetic testing in the clinical context may contribute to patients making informed value-based decisions and drawing the maximum benefit from clinical applications of genetic and genomic innovations.
| S-EPMC4777394 | biostudies-literature
Project description:Early in pregnancy women and their partners face the complex decision on whether or not to participate in prenatal testing for fetal chromosomal abnormalities. Several studies show that the majority of pregnant women currently do not make informed decisions regarding prenatal testing. As the range of prenatal tests is expanding due to the development of new techniques such as non-invasive prenatal testing (NIPT), autonomous reproductive decision-making is increasingly challenging. In this study, a randomised controlled trial was conducted to evaluate the effect of a web-based multimedia decision aid on decision-making regarding prenatal testing. The decision aid provided both written and audiovisual information on prenatal tests currently available, that is, prenatal screening by first-trimester combined testing, NIPT and invasive diagnostic testing through chorionic villus sampling or amniocentesis. Furthermore, it contained values clarification exercises encouraging pregnant women to reflect on the potential harms and benefits of having prenatal tests performed. The use of the decision aid improved informed decision-making regarding prenatal testing. Of pregnant women allocated to the intervention group (n=130) 82.3% made an informed choice compared with 66.4% of women in the control group (n=131), P=0.004. As the vast majority of pregnant women made decisions consistent with their attitudes towards having prenatal testing performed, this improvement in informed decision-making could be attributed mainly to an increase in decision-relevant knowledge. This study shows that the implementation of a web-based multimedia decision aid directly facilitates the ultimate goal of prenatal testing for fetal chromosomal abnormalities, which is enabling informed autonomous reproductive choice.
| S-EPMC5027684 | biostudies-literature
Project description:Background/aimThe law on consent has changed in Scotland with the introduction of the Adults with Incapacity (Scotland) Act 2000. This Act introduces the concept of proxy consent in Scotland. Many patients in intensive care are unable to participate in the decision making process because of their illness and its treatment. It is normal practice to provide relatives with information on the patient's condition, treatment, and prognosis as a substitute for discussion directly with the patient. The relatives of intensive care patients appeared to believe that they already had the right to consent on behalf of an incapacitated adult. The authors' aim was to assess the level of knowledge among relatives of intensive care patients of both the old and new law using a structured questionnaire.MethodsThe next of kin of 100 consecutive patients completed a structured questionnaire. Each participant had the questions read to them and their answers recorded. Patients were not involved in the study.ResultsFew (10%) were aware of the changes. Most (88%) thought that they previously could give consent on behalf of an incapacitated adult. Only 13% have ever discussed the preferences for life sustaining treatment with the patient but 84% felt that they could accurately represent the patient's wishes.ConclusionsThere appeared to be a lack of public awareness of the impending changes. The effectiveness of the Act at improving the care of the mentally incapacitated adult will depend largely on how successful it is at encouraging communication and decision making in advance of incapacity occurring.
| S-EPMC1733945 | biostudies-literature