Reproductive decision-making in the context of hereditary cancer: the effects of an online decision aid on informed decision-making

Abstract

Individuals having a genetic predisposition to cancer and their partners face challenging decisions regarding their wish to have children. This study aimed to determine the effects of an online decision aid to support couples in making an informed decision regarding their reproductive options. A nationwide pretest-posttest study was conducted in the Netherlands among 131 participants between November 2016 and May 2018. Couples were eligible for participation if one partner had a pathogenic variant predisposing for an autosomal dominant hereditary cancer syndrome. Participants completed a questionnaire before use (T0), and at 3 months (T3) after use of the decision aid to assess the primary outcome measure informed decision-making, and the secondary outcome measures decisional conflict, knowledge, realistic expectations, level of deliberation, and decision selfefficacy. T0-T3 comparisons show an overall positive effect for all outcome measures (all ps < 0.05; knowledge (ES = − 1.05), decisional conflict (ES = 0.99), participants' decision self-efficacy (ES = −0.55), level of deliberation (ES = − 0.50), and realistic expectations (ES = − 0.44). Informed decision-making increased over time and 58.0% of the participants made an informed reproductive decision at T3. The online decision aid seems to be an appropriate tool to complement standard reproductive counseling to support our target group in making an informed reproductive decision. Use of the decision aid may lessen the negative psychological impact of decision-making on couples' daily life and wellbeing.

Danish heritable retinoblastoma survivors' perspectives on reproductive choices: “It's important for me, not to pass on this condition”

“…An online decision aid might be beneficial in supporting survivors of heritable RB, assisting genetic counseling, and may lessen the associated negative psychological impact of the process. (Reumkens et al, 2018(Reumkens et al, , 2021.…”

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

“…Further limitations of this study pertained to the fact that not all items of the questionnaires used have been validated in the Dutch language or for our specific clinical population. All concepts have however been measured in previous studies in similar clinical populations and/or the Dutch language (Gietel‐Habets et al, 2017 ; Reumkens, Tummers, et al, 2019 ; Reumkens et al, 2021 ). The JIDM scale was however self‐developed and has only been tested within a small usability test among our study population.…”

“…This scale consists of 6 questions (Cronbach's α = 0.89) on a 5‐point Likert scale ranging from strongly disagree [0] to strongly agree [5]. Based on median scores, deliberation scores of ≥23 (total 30) were considered to be high (Reumkens et al, 2021 ).…”

Genomics makes prostate cancer personal

“…These include prenatal diagnosis where the genetic status of the fetus could be identified with a view to ending an affected pregnancy, and preimplantation genetic diagnosis where couples undergo in‐vitro fertilisation or intracytoplasmic sperm injection. The generated embryos can then be tested for the pathogenic familial variant and unaffected embryos transferred back into the uterus 14 …”

“…The generated embryos can then be tested for the pathogenic familial variant and unaffected embryos transferred back into the uterus. 14…”