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Reproductive decision-making in the context of hereditary cancer: the effects of an online decision aid on informed decision-making.
Reumkens, Kelly; Tummers, Marly H E; Severijns, Yil; Gietel-Habets, Joyce J G; van Kuijk, Sander M J; Aalfs, Cora M; van Asperen, Christi J; Ausems, Margreet G E M; Collée, Margriet; Dommering, Charlotte J; Kets, Marleen; van der Kolk, Lizet E; Oosterwijk, Jan C; Tjan-Heijnen, Vivianne C G; van der Weijden, Trudy; de Die-Smulders, Christine E M; van Osch, Liesbeth A D M.
Affiliation
  • Reumkens K; Department of Clinical Genetics, Maastricht University Medical Centre+, Maastricht, the Netherlands.
  • Tummers MHE; GROW School for Oncology and Developmental Biology, Maastricht University Medical Centre+, Maastricht, the Netherlands.
  • Severijns Y; Department of Clinical Genetics, Maastricht University Medical Centre+, Maastricht, the Netherlands.
  • Gietel-Habets JJG; GROW School for Oncology and Developmental Biology, Maastricht University Medical Centre+, Maastricht, the Netherlands.
  • van Kuijk SMJ; GROW School for Oncology and Developmental Biology, Maastricht University Medical Centre+, Maastricht, the Netherlands. yil.severijns@maastrichtuniversity.nl.
  • Aalfs CM; Department of Health Promotion, School CAPHRI, Faculty of Health, Medicine and Life Sciences, Maastricht University, Postbox 616, 6200, MD, Maastricht, the Netherlands. yil.severijns@maastrichtuniversity.nl.
  • van Asperen CJ; Department of Clinical Genetics, Maastricht University Medical Centre+, Maastricht, the Netherlands.
  • Ausems MGEM; GROW School for Oncology and Developmental Biology, Maastricht University Medical Centre+, Maastricht, the Netherlands.
  • Collée M; Department of Clinical Epidemiology and Medical Technology Assessment, Maastricht University Medical Centre+, Maastricht, the Netherlands.
  • Dommering CJ; Department of Clinical Genetics, Amsterdam UMC, Academic Medical Centre, Amsterdam, the Netherlands.
  • Kets M; Department of Clinical Genetics, Leiden University Medical Center, Leiden, the Netherlands.
  • van der Kolk LE; Department of Genetics, Division of Biomedical Genetics, University Medical Center Utrecht, Utrecht, the Netherlands.
  • Oosterwijk JC; Department of Clinical Genetics, Erasmus University Medical Center, Rotterdam, the Netherlands.
  • Tjan-Heijnen VCG; Department of Clinical Genetics, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands.
  • van der Weijden T; Department of Human Genetics, Radboud University Medical Center Nijmegen, Nijmegen, the Netherlands.
  • de Die-Smulders CEM; Family Cancer Clinic, Netherlands Cancer Institute, Amsterdam, the Netherlands.
  • van Osch LADM; Department of Genetics, Groningen University Medical Center, University of Groningen, Groningen, the Netherlands.
J Community Genet ; 12(1): 101-110, 2021 Jan.
Article de En | MEDLINE | ID: mdl-32880035
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 (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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Texte intégral: 1 Collection: 01-internacional Base de données: MEDLINE Aspects: Patient_preference Langue: En Journal: J Community Genet Année: 2021 Type de document: Article Pays d'affiliation: Pays-Bas Pays de publication: Allemagne

Texte intégral: 1 Collection: 01-internacional Base de données: MEDLINE Aspects: Patient_preference Langue: En Journal: J Community Genet Année: 2021 Type de document: Article Pays d'affiliation: Pays-Bas Pays de publication: Allemagne