Exploring the preferences of involved health professionals regarding the implementation of an online decision aid to support couples during reproductive decision-making in hereditary cancer: a mixed methods approach

Reumkens, Kelly; Die-Smulders, C.E.M. de; Osch, L.A.D.M. van

doi:10.1007/s10689-019-00119-7

Cited by 3 publications

(2 citation statements)

References 27 publications

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“…The DA is meant as an additional support tool and is no replacement of (online) consultations with a genetic counselor, but a relevant and appropriate addition to reproductive genetic counseling (Gietel‐Habets et al, 2018 ; Stacey et al, 2014 ). Preferably, a referral to the tool could be included in the standard report couples receive after consultation (Reumkens, de Die‐Smulders, & van Osch, 2019 ). In this way, couples receive information from the consultations and from the DA.…”

Section: Discussionmentioning

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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Section: Discussionmentioning

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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“…In this way, we achieved a good uptake of the PtDA when it was offered to patients. The PtDA is currently freely available and is incorporated in the website of the patient organization as proposed by Reumkens et al [ 40 ].…”

Section: Discussionmentioning

confidence: 99%

Implementing a patient decision aid, a process evaluation of a large-scale pre- and post-implementation trial

Daniela

Russell

Werkhoven

et al. 2020

Breast Cancer Res Treat

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Purpose Patient decision aids (PtDAs) have been reported to have a positive influence on patients making a health care decision in trials. Nevertheless, post-trial implementation is poor. The aim of this study is to explore patient, clinician, and organizational success factors for implementing a PtDA designed for breast cancer patients, facing a decision on their radiation treatment. Methods We performed a process evaluation within a multi-center pre- and post-implementation trial. The PtDA was incorporated as much as possible in the logistics of 13 participating centers. Tracking data were collected on PtDA use. Process characteristics were recorded by both clinicians and patients. A logistic regression method was applied to investigate which process characteristics were significantly related to the probability that patients logged in to the PtDA. Results 189 patients received the PtDA of whom140 (77%) used the PtDA. If patients received the link via the surgery department they were more likely to use the PtDA (OR 9.77 (1.28–74.51)), compared to patients that received the link via the radiation oncology department. If the report of the multidisciplinary team stated that radiation treatment “had to be discussed with the patient”, patients were more likely to use the PtDA (OR 2.29 (1.12–4.71)). Educational level was not related to the probability of PtDA use. Conclusions We accomplished a high level of PtDA use. Patients were more likely to use the PtDA if they received the link via the surgery department and if “to be discussed with the patient” was written in the multidisciplinary team report.

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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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Exploring the preferences of involved health professionals regarding the implementation of an online decision aid to support couples during reproductive decision-making in hereditary cancer: a mixed methods approach

Cited by 3 publications

References 27 publications

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

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

Implementing a patient decision aid, a process evaluation of a large-scale pre- and post-implementation 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

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