Informed Choice for Participation in Down Syndrome Screening: Development and Content of a Web-Based Decision Aid

Background In Denmark, all pregnant women are offered screening in early pregnancy to estimate the risk of having a fetus with Down syndrome. Pregnant women participating in the screening program should be provided with information and support to allow them to make an informed choice. There is increasing interest in the use of Web-based technology to provide information and digital solutions for the delivery of health care. Objective The aim of this study was to develop an eHealth tool that contained accurate and relevant information to allow pregnant women to make an informed choice about whether to accept or reject participation in screening for Down syndrome. Methods The development of the eHealth tool involved the cooperation of researchers, technology experts, clinicians, and users. The underlying theoretical framework was based on participatory design, the International Patient Decision Aid Standards (IPDAS) Collaboration guide to develop a patient decision aid, and the roadmap for developing eHealth technologies from the Center for eHealth Research and Disease Management (CeHRes). The methods employed were a systematic literature search, focus group interviews with 3 care providers and 14 pregnant women, and 2 weeks of field observations. A qualitative descriptive approach was used in this study. Results Relevant themes from pregnant women and care providers with respect to information about Down syndrome screening were identified. Based on formalized processes for developing patient decision aids and eHealth technologies, an interactive website containing information about Down syndrome, methods of screening, and consequences of the test was developed. The intervention was based on user requests and needs, and reflected the current hospital practice and national guidelines. Conclusions This paper describes the development and content of an interactive website to support pregnant women in making informed choices about Down syndrome screening. To develop the website, we used a well-structured process based on scientific evidence and involved pregnant women, care providers, and technology experts as stakeholders. To our knowledge, there has been no research on the combination of IPDAS standards and the CeHRes roadmap to develop an eHealth tool to target information about screening for Down syndrome.

Download Full-text

Use of a patient decision aid for prenatal screening for Down syndrome: what do pregnant women say?

BMC Pregnancy and Childbirth ◽

10.1186/s12884-017-1273-0 ◽

2017 ◽

Vol 17 (1) ◽

Cited By ~ 10

Author(s):

Maria Esther Leiva Portocarrero ◽

Anik M. C. Giguère ◽

Johanie Lépine ◽

Mirjam M. Garvelink ◽

Hubert Robitaille ◽

...

Keyword(s):

Down Syndrome ◽

Pregnant Women ◽

Decision Aid ◽

Prenatal Screening ◽

Patient Decision Aid ◽

Patient Decision

Download Full-text

Routinization of prenatal screening with the non-invasive prenatal test: pregnant women’s perspectives

European Journal of Human Genetics ◽

10.1038/s41431-021-00940-8 ◽

2021 ◽

Author(s):

Karuna R. M. van der Meij ◽

Annabel Njio ◽

Linda Martin ◽

Janneke T. Gitsels-van der Wal ◽

Mireille N. Bekker ◽

...

Keyword(s):

Down Syndrome ◽

Pregnant Women ◽

Prenatal Screening ◽

Screening Program ◽

Informed Choice ◽

Aneuploidy Screening ◽

Non Invasive ◽

Fetal Aneuploidy ◽

Societal Pressure ◽

Prenatal Test

AbstractDue to the favorable test characteristics of the non-invasive prenatal test (NIPT) in the screening of fetal aneuploidy, there has been a strong and growing demand for implementation. In the Netherlands, NIPT is offered within a governmentally supported screening program as a first-tier screening test for all pregnant women (TRIDENT-2 study). However, concerns have been raised that the test’s favorable characteristics might lead to uncritical use, also referred to as routinization. This study addresses women’s perspectives on prenatal screening with NIPT by evaluating three aspects related to routinization: informed choice, freedom to choose and (personal and societal) perspectives on Down syndrome. Nationwide, a questionnaire was completed by 751 pregnant women after receiving counseling for prenatal screening. Of the respondents, the majority (75.5%) made an informed choice for prenatal screening as measured by the multidimensional measure of informed choice (MMIC). Education level and religious affiliation were significant predictors of informed choice. The main reason to accept screening was “seeking reassurance” (25.5%), and the main reason to decline was “every child is welcome” (30.6%). The majority of respondents (87.7%) did not perceive societal pressure to test. Differences between test-acceptors and test-decliners in personal and societal perspectives on Down syndrome were found. Our study revealed high rates of informed decision-making and perceived freedom to choose regarding fetal aneuploidy screening, suggesting that there is little reason for concern about routinization of NIPT based on the perspectives of Dutch pregnant women. Our findings highlight the importance of responsible implementation of NIPT within a national screening program.

Download Full-text

Health literacy in pregnant women facing prenatal screening may explain their intention to use a patient decision aid: a short report

BMC Research Notes ◽

10.1186/s13104-016-2141-0 ◽

2016 ◽

Vol 9 (1) ◽

Cited By ~ 11

Author(s):

Agathe Delanoë ◽

Johanie Lépine ◽

Maria Esther Leiva Portocarrero ◽

Hubert Robitaille ◽

Stéphane Turcotte ◽

...

Keyword(s):

Health Literacy ◽

Pregnant Women ◽

Decision Aid ◽

Prenatal Screening ◽

Intention To Use ◽

Short Report ◽

Patient Decision Aid ◽

Patient Decision

Download Full-text

Assessing Preference Shift and Effects on Patient Knowledge and Decisional Conflict: Cross-Sectional Study of an Interactive Prostate-Specific Antigen Test Patient Decision Aid (Preprint)

10.2196/preprints.11102 ◽

2018 ◽

Author(s):

Peter Scalia ◽

Glyn Elwyn ◽

Jan Kremer ◽

Marjan Faber ◽

Marie-Anne Durand

Keyword(s):

Prostate Specific Antigen ◽

Decision Aid ◽

Specific Antigen ◽

Decisional Conflict ◽

Patient Decision Aid ◽

Web Based ◽

Psa Test ◽

Psa Testing ◽

Patient Decision ◽

The Web

BACKGROUND Randomized trials of Web-based decision aids for prostate-specific antigen (PSA) testing indicate that these interventions improve knowledge and reduce decisional conflict. However, we do not know about these tools’ impact on people who spontaneously use a PSA testing patient decision aid on the internet. OBJECTIVE The objectives of this study were to (1) determine the impact of the Web-based PSA Option Grid patient decision aid on preference shift, knowledge, and decisional conflict; (2) identify which frequently asked questions (FAQs) are associated with preference shift; and (3) explore the possible relationships between these outcomes. METHODS Data were collected between January 1, 2016, and December 30, 2017. Users who accessed the Web-based, interactive PSA Option Grid were provided with 3 options: have a PSA test, no PSA test, or unsure. Users first declared their initial preference and then completed 5 knowledge questions and a 4-item (yes or no) validated decisional conflict scale (Sure of myself, Understand information, Risk-benefit ratio, Encouragement; SURE). Next, users were presented with 10 FAQs and asked to identify their preference for each question based on the information provided. At the end, users declared their final preference and completed the same knowledge and decisional conflict questions. Paired sample t tests were employed to compare before and after knowledge and decisional conflict scores. A multinomial regression analysis was performed to determine which FAQs were associated with a shift in screening preference. RESULTS Of all the people who accessed the PSA Option Grid, 39.8% (186/467) completed the interactive journey and associated surveys. After excluding 22 female users, we analyzed 164 responses. At completion, users shifted their preference to “not having the PSA test” (43/164, 26.2%, vs 117/164, 71.3%; P<.001), had higher levels of knowledge (112/164, 68.3%, vs 146/164, 89.0%; P<.001), and lower decisional conflict (94/164, 57.3%, vs 18/164, 11.0%; P<.001). There were 3 FAQs associated with preference shift: “What does the test involve?” “If my PSA level is high, what are the chances that I have prostate cancer?” and “What are the risks?” We did not find any relationship between knowledge, decisional conflict, and preference shift. CONCLUSIONS Unprompted use of the interactive PSA Option Grid leads to preference shift, increased knowledge, and reduced decisional conflict, which confirms the ability of these tools to influence decision making, even when used outside clinical encounters.

Download Full-text

Decision Making when Cancer Becomes Chronic: A Decisional Needs Assessment of Medullary Thyroid Cancer Patients’, Families’, and Providers’ Needs for a Web-based Patient Decision Aid (Preprint)

10.2196/preprints.27484 ◽

2021 ◽

Author(s):

Danielle Shojaie ◽

Aubri S Hoffman ◽

Ruth Amaku ◽

Maria E Cabanillas ◽

Julie Ann Sosa ◽

...

Keyword(s):

Decision Making ◽

Decision Support ◽

Needs Assessment ◽

Shared Decision Making ◽

Decision Aid ◽

Chronic Phase ◽

Shared Decision ◽

Patient Decision Aid ◽

Web Based ◽

Patient Decision

BACKGROUND In cancers with a chronic phase, patients and family caregivers may face difficult decisions such as whether to start a novel therapy, whether to enroll in a clinical trial, and when to stop treatment. These decisions are complex, require an understanding of uncertainty, and necessitate consideration of patients’ informed preferences. For some cancers, such as medullary thyroid carcinoma, these decisions may also involve significant out-of-pocket costs and effects on family members. Providers expressed a need for web-based interventions that can be delivered between consultations to provide education and prepare patients and families for discussing these decisions. To ensure these tools are effective, usable, and understandable, studies are needed to identify patients’, families’, and providers’ primary decision-making needs and optimal design strategies for a web-based patient decision aid. OBJECTIVE Following international guidelines for development of a web-based patient decision aid, the objectives of this study were to: 1) engage potential users to guide development; 2) review the existing literature and available tools; 3) assess users’ decision-making experiences, needs, and design recommendations; and 4) identify shared decision-making approaches to address each need. METHODS This study used the Decisional Needs Assessment approach, including creating a Stakeholder Advisory Panel, mapping decision pathways, conducting an environmental scan of existing materials, and administering a decisional needs assessment questionnaire. Thematic analyses identified the current decision-making pathways, unmet decision-making needs, and decision support strategies to meet each need. RESULTS Stakeholders reported wide heterogeneity in decision timing and pathways. Relevant existing materials included two systematic reviews, 9 additional papers, and multiple educational websites, but nothing that met the criteria of a patient decision aid. Patients and family members emphasized needing plain language (46 of 54, 85%), shared decision making (45 of 54, 83%), and help with family discussions (39 of 54, 72%). Additional needs included information about uncertainty, lived experience, and costs. Providers (n = 10) reported needing interventions that address misinformation (9 of 10, 90%), foster realistic expectations (9 of 10, 90%), and address mistrust in clinical trials (5 of 10, 50%). Additional needs included provider tools to support shared decision making. Both groups recommended designing a web-based patient decision aid that can be tailored (64 of 64, 100%) and delivered on a hospital website (53 of 64, 83%), and that focuses on quality of life (45 of 64, 70%) and provides step-by-step guidance (43 of 64, 67%). The study team identified best practices to meet each need, which are presented in the proposed Decision Support Design Guide. CONCLUSIONS Patients, families, and providers report multifaceted decision support needs during the chronic phase of cancer. Web-based patient decision aids are needed that provide tailored support over time, and explicitly address uncertainty, quality of life, realistic expectations, and effects on families.

Download Full-text