Support needs of couples with hereditary breast and ovarian cancer during reproductive decision making

Gietel-Habets, J.J.G.; Die-Smulders, C.E.M. de; Derks-Smeets, I.A.P.; Tibben, Aad; Tjan‐Heijnen, Vivianne C. G.; Golde, R. van; Gómez-García, Encarna B.; Osch, L.A.D.M. van

doi:10.1002/pon.4729

Cited by 20 publications

(24 citation statements)

References 30 publications

(59 reference statements)

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“…Previous studies have shown that couples experience difficulties in the reproductive decision-making process (Gietel-Habets et al 2018 ; Klitzman et al 2007 ). Couples weigh their needs, desires, and competing concerns (e.g., physical and psychological concerns, e.g., regarding an IVF treatment) and they report difficulties resolving these concerns (Gietel-Habets et al 2018 ; Klitzman et al 2007 ).…”

Section: Introductionmentioning

confidence: 99%

Hereditary diseases and child wish: exploring motives, considerations, and the (joint) decision-making process of genetically at-risk couples

et al. 2021

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Couples who are at risk of transmitting a genetic disease to their offspring may face difficult challenges regarding reproductive decision-making. Deciding if, and how, to purse their child wish can be a demanding process. This study aims to describe the reproductive joint decision-making process of genetically at-risk couples. A qualitative study was conducted with 16 couples (N=31) at risk of transmitting a genetic disease to their offspring and who received genetic counseling. Most couples were not aware of all available reproductive options in the Netherlands. A variety of motives was reported with almost all couples expressing a preference towards a reproductive option in which the child is genetically related to both parents. Only a few couples considered other options such as the use of donor gametes, adoption, and foster parenting. All couples indicated that they had multiple conversations to reach a mutually supported reproductive decision. Several carriers reported feelings of guilt and in some couples, the woman appeared to have a greater impact in the decision-making process as she should carry a pregnancy and should undergo medical treatments. This study provides insight in the extensive decision-making process of genetically at-risk couples and the role of both partners in this process. These findings can guide the development of genetic counseling (e.g., increase awareness of available reproductive options) and decision support for these couples.

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Section: Introductionmentioning

confidence: 99%

Hereditary diseases and child wish: exploring motives, considerations, and the (joint) decision-making process of genetically at-risk couples

et al. 2021

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“…Individuals who have a genetic predisposition to cancer and their partners may experience difficulties during reproductive decision-making (Derks-Smeets et al 2014;Gietel-Habets et al 2018;Dekeuwer and Bateman 2013;Ormondroyd et al 2012;Dommering et al 2010;Donnelly et al 2013;Van Asperen et al 2002).…”

Section: Discussionmentioning

confidence: 99%

“…Previous studies among couples who are aware that one of both partners has a genetic predisposition to cancer and who have a high genetic risk of transmitting this predisposition to their offspring, indicated that couples experience difficulties with reproductive decision-making (Derks-Smeets et al 2014;Gietel-Habets et al 2018;Dekeuwer and Bateman 2013;Ormondroyd et al 2012;Dommering et al 2010;Donnelly et al 2013;Van Asperen et al 2002). Couples have to cope with the increased risk of developing cancer of one of the partners and additionally are worried about the risk of passing on the predisposition to cancer to their offspring (Smith et al 2004).…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2020

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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.

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“…Previous studies on the reproductive decision-making process in couples who are at risk of transmitting a genetic disease indicate that reproductive decision-making is often a demanding and complex process in which multiple, sequential decisions are made and many factors are considered in order to reach a decision [11,23,24]. In a study from Derks-Smeets et al (2014), couples with a BRCA mutation mentioned several significant advantages of PGT (e.g.…”

Section: Discussionmentioning

confidence: 99%

Motives and considerations regarding PGT in couples carrying a structural chromosomal abnormality: a qualitative exploration

Krom

Severijns

Vlieg

et al. 2020

J Assist Reprod Genet

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Purpose This study aims to describe the motives and considerations of couples carrying a structural chromosomal abnormality deciding on preimplantation genetic testing (PGT). Methods A qualitative exploratory study was conducted using semi-structured dyadic interviews with 13 couples (N = 26) carrying a structural chromosomal abnormality. All couples had an informative consultation in our PGT centre in the Netherlands. Results Almost all couples considered PGT or natural conception combined with prenatal diagnosis (PND) as the only two reproductive options. Among several considerations mentioned, the majority indicated that the wish to increase the chance of a successful pregnancy was the most important motive to opt for PGT. All couples who opted for PGT had first tried to conceive spontaneously and entered the PGT programme because of their adverse experiences during these attempts (infertility, recurrent miscarriage, termination of pregnancy, birth of an affected child). Couples that refrained from PGT were of advanced maternal age and expressed the long trajectory of PGT as the main reason to refrain. If conceiving spontaneously would not lead to an ongoing pregnancy, these couples also indicated that they would use PGT. Conclusion This study shows that couples carrying a structural chromosomal abnormality consider PGT and spontaneous conception with PND as relevant reproductive options. They are looking for the option that is in their opinion the fastest way to establish a successful pregnancy. Information on the perceived pros and cons of PGT or spontaneous conception in these couples can help to optimize counselling and psychological support during the decision-making process.

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Support needs of couples with hereditary breast and ovarian cancer during reproductive decision making

Abstract: Couples with HBOC who need to make a reproductive decision have specific needs for guidance and support, of which the desired content and methods can vary. It is therefore important to identify vulnerable couples and to attune counselling to couples' needs.

Cited by 20 publications

References 30 publications

Hereditary diseases and child wish: exploring motives, considerations, and the (joint) decision-making process of genetically at-risk couples

Hereditary diseases and child wish: exploring motives, considerations, and the (joint) decision-making process of genetically at-risk couples

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

Motives and considerations regarding PGT in couples carrying a structural chromosomal abnormality: a qualitative exploration

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