To what extent do decision aids for prenatal screening and diagnosis address involvement of partners in decision-making? - An environmental scan

Severijns, Yil; Linden, H.; Die-Smulders, C.E.M. de; Hoving, Ciska; Jansen, Jesse; Osch, L.A.D.M. van

doi:10.1016/j.pec.2021.04.009

Cited by 3 publications

(2 citation statements)

References 22 publications

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“…Although, in general, counselling and other forms of decision support for pregnancy-related decisions give more attention to the perspective of the woman (Farrell, Mercer, Agatisa, & Coleridge, 2019). However, involvement of both partners is in line with women's preference as women have emphasized that they perceive the input from their partner in the decisionmaking process as important (Laberge et al, 2019;Severijns, van der Linden, et al, 2021). Furthermore, previous research indicates that joint informed decisionmaking, i.e.…”

Section: Introductionmentioning

confidence: 99%

The Effectiveness of an Online Decision Aid on Reproductive Options for Couples at Risk of Transmitting a Genetic Disease to their Offspring: Protocol for a Randomized Controlled Trial

Severijns

Vries

Tan-Sindhunata

et al. 2023

HPB

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Introduction: Couples at high risk of transmitting a genetic disease to their offspring have several reproductive options. As decision making is often experienced as difficult, there is a need for a decision aid (DA), to assist couples in their reproductive decisionmaking process and to reduce decisional conflict and increase (joint) informed decisionmaking. This article describes the design of a nationwide randomized controlled trial to assess the efficacy of the online DA. Methods:The development of the DA was based on the International Patient Decision Aid Standards (IPDAS) guidelines. A nationwide multi-centre Randomized Controlled Trial (RCT) will be conducted in the eight genetic centres in the Netherlands to assess the effects of the DA, compared to a website with standardized information based on information provided during standard care. The required sample size is 128 couples. Participants are randomly assigned to either the intervention or control group and are asked to complete four questionnaires within six months to study the effects of the information. The questionnaires will assess decisional conflict, knowledge, attitude, deliberation, and the decision-making process between partners.Discussion: Findings of this study can help to improve the counselling of couples at risk of transmitting a genetic disease to their offspring. Additionally, it provides insight into the joint informed decision-making process of couples. This could help professionals to better support both partners during consultations.Trial registration number: N9415.

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Section: Introductionmentioning

confidence: 99%

The Effectiveness of an Online Decision Aid on Reproductive Options for Couples at Risk of Transmitting a Genetic Disease to their Offspring: Protocol for a Randomized Controlled Trial

Severijns

Vries

Tan-Sindhunata

et al. 2023

HPB

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“…Furthermore, there are indications that jointly deliberating and settling together, on a decision that affects both partners, may yield better health outcomes (Osamor & Grady, 2018 ). When reviewing the extent of partner involvement in decision support tools related to prenatal screening and diagnosis, we found that many decision aids (DAs) do not focus on partner involvement (Severijns, van der Linden, et al, 2021 ). Making a joint informed decision entails the concepts of informed decision‐making; meaning that both partners should have sufficient knowledge, that partners should deliberate separately and together and that their decision is value consistent.…”

Section: Introductionmentioning

confidence: 99%

The effects of an online decision aid to support the reproductive decision‐making process of genetically at risk couples—A pilot study

Severijns

Heijmans

Die-Smulders

et al. 2022

Journal of Genetic Counseling

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Couples at risk of transmitting a genetic disease to their offspring may experience doubts about their reproductive options. This study examines the effects of an online decision aid (DA) on the (joint) reproductive decision-making process of couples (not pregnant at time of inclusion) at risk of transmitting a genetic disease to their offspring. The primary outcome is decisional conflict, and secondary outcomes are knowledge, realistic expectations, deliberation, joint informed decision-making, and decisional self-efficacy. These outcomes were measured with a pretest-posttest design: before use (T0), after use (T1), and 2 weeks after use (T2) of the decision aid (DA). Usability of the DA was assessed at T1. Paired sample t-tests were used to compute differences between baseline and subsequent measurements. The comparisons of T0-T1 and T0-T2 indicate a significant reduction in mean decisional conflict scores with stronger effects for participants with high baseline decisional conflict scores. Furthermore, use of the DA led to increased knowledge, improved realistic expectations, and increased levels of deliberation, with higher increase in participants with low baseline scores.Decision self-efficacy only improved for participants with lower baseline scores.Participants indicated that the information in the DA was comprehensible and clearly

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Do online decision aids reflect new prenatal screening and testing options? An environmental scan and content analysis

McKinn

Freeman

et al. 2022

PEC Innovation

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To what extent do decision aids for prenatal screening and diagnosis address involvement of partners in decision-making? - An environmental scan

Cited by 3 publications

References 22 publications

The Effectiveness of an Online Decision Aid on Reproductive Options for Couples at Risk of Transmitting a Genetic Disease to their Offspring: Protocol for a Randomized Controlled Trial

The Effectiveness of an Online Decision Aid on Reproductive Options for Couples at Risk of Transmitting a Genetic Disease to their Offspring: Protocol for a Randomized Controlled Trial

The effects of an online decision aid to support the reproductive decision‐making process of genetically at risk couples—A pilot study

Do online decision aids reflect new prenatal screening and testing options? An environmental scan and content analysis

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