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

被引：8

作者：

Reumkens, Kelly ^{[1
,2
]}

Tummers, Marly H. E. ^{[1
,2
]}

Severijns, Yil ^{[2
,3
]}

Gietel-Habets, Joyce J. G. ^{[1
,2
]}

van Kuijk, Sander M. J. ^{[4
]}

Aalfs, Cora M. ^{[5
]}

van Asperen, Christi J. ^{[6
]}

Ausems, Margreet G. E. M. ^{[7
]}

Collee, Margriet ^{[8
]}

Dommering, Charlotte J. ^{[9
]}

Kets, Marleen ^{[10
]}

van der Kolk, Lizet E. ^{[11
]}

Oosterwijk, Jan C. ^{[12
]}

Tjan-Heijnen, Vivianne C. G. ^{[2
,13
]}

van der Weijden, Trudy ^{[14
]}

de Die-Smulders, Christine E. M. ^{[1
,2
]}

van Osch, Liesbeth A. D. M. ^{[1
,3
]}

机构：

[1] Maastricht Univ, Dept Clin Genet, Med Ctr, Maastricht, Netherlands

[2] Maastricht Univ, GROW Sch Oncol & Dev Biol, Med Ctr, Maastricht, Netherlands

[3] Maastricht Univ, Dept Hlth Promot, Sch CAPHRI, Fac Hlth Med & Life Sci, Postbox 616, NL-6200 MD Maastricht, Netherlands

[4] Maastricht Univ, Dept Clin Epidemiol & Med Technol Assessment, Med Ctr, Maastricht, Netherlands

[5] Amsterdam UMC, Dept Clin Genet, Acad Med Ctr, Amsterdam, Netherlands

[6] Leiden Univ, Dept Clin Genet, Med Ctr, Leiden, Netherlands

[7] Univ Med Ctr Utrecht, Dept Genet, Div Biomed Genet, Utrecht, Netherlands

[8] Erasmus MC, Dept Clin Genet, Rotterdam, Netherlands

[9] Vrije Univ Amsterdam, Dept Clin Genet, Amsterdam UMC, Amsterdam, Netherlands

[10] Radboud Univ Nijmegen, Dept Human Genet, Med Ctr Nijmegen, Nijmegen, Netherlands

[11] Netherlands Canc Inst, Family Canc Clin, Amsterdam, Netherlands

[12] Univ Groningen, Dept Genet, Med Ctr, Groningen, Netherlands

[13] Maastricht Univ, Dept Med Oncol, Med Ctr, Maastricht, Netherlands

[14] Maastricht Univ, Dept Family Med, Sch CAPHRI, Fac Hlth Med & Life Sci, Maastricht, Netherlands

来源：

JOURNAL OF COMMUNITY GENETICS | 2021年 / 12卷 / 01期

关键词：

Decision aid; Hereditary cancer; Patient participation; Preimplantation genetic testing; Prenatal diagnosis; PREIMPLANTATION GENETIC DIAGNOSIS; COUPLES; BREAST; WOMEN; RISK; CARRIERS; OPTIONS; CHOICE; NEEDS;

D O I：

10.1007/s12687-020-00484-2

中图分类号：

Q3 [遗传学];

学科分类号：

071007 ; 090102 ;

摘要：

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 self-efficacy. T0-T3 comparisons show an overall positive effect for all outcome measures (allps < 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.

引用

页码：101 / 110

页数：10

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