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The effects of an online decision aid to support the reproductive decision-making process of genetically at risk couples-A pilot study.
Severijns, Yil; Heijmans, Maartje W F; de Die-Smulders, Christine E M; Bijlsma, Emilia K; Corsten-Janssen, Nicole; Joosten, Sara J R; van Kuijk, Sander M J; Lichtenbelt, Klaske D; Ottenheim, Cecile P E; Stuurman, Kyra E; Tan-Sindhunata, Gita M B; de Vries, Hein; van Osch, Liesbeth A D M.
Afiliação
  • Severijns Y; Department of Health Promotion/CAPHRI, Maastricht University, Maastricht, The Netherlands.
  • Heijmans MWF; GROW School for Oncology & Reproduction, Maastricht University Medical Centre+, Maastricht, The Netherlands.
  • de Die-Smulders CEM; Department of Health Promotion/CAPHRI, Maastricht University, Maastricht, The Netherlands.
  • Bijlsma EK; GROW School for Oncology & Reproduction, Maastricht University Medical Centre+, Maastricht, The Netherlands.
  • Corsten-Janssen N; Department of Clinical Genetics, Maastricht University Medical Centre +, Maastricht, The Netherlands.
  • Joosten SJR; Department of Clinical Genetics, Leiden University Medical Centre, Leiden, The Netherlands.
  • van Kuijk SMJ; University of Groningen, University Medical Center Groningen Groningen, Department of Genetics, Groningen, The Netherlands.
  • Lichtenbelt KD; Department of Clinical Genetics, Radboudumc Nijmegen, Nijmegen, The Netherlands.
  • Ottenheim CPE; Department of Clinical Epidemiology and Medical Technology Assessment, Maastricht University Medical Centre+, Maastricht, The Netherlands.
  • Stuurman KE; Department of Genetics, Utrecht University Medical Center, Utrecht, The Netherlands.
  • Tan-Sindhunata GMB; Department of Human Genetics, Amsterdam UMC, Amsterdam, The Netherlands.
  • de Vries H; Department of Clinical Genetics, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands.
  • van Osch LADM; Department of Human Genetics, Amsterdam UMC, Amsterdam, The Netherlands.
J Genet Couns ; 32(1): 153-165, 2023 02.
Article em En | MEDLINE | ID: mdl-36056622
ABSTRACT
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 organized. These first results indicate that this online DA is an appropriate tool to support couples at risk of transmitting a genetic disease and a desire to have (a) child(ren) in their reproductive decision-making process.
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Técnicas de Apoio para a Decisão / Tomada de Decisões Tipo de estudo: Etiology_studies / Prognostic_studies / Risk_factors_studies Limite: Child / Female / Humans / Pregnancy Idioma: En Revista: J Genet Couns Assunto da revista: GENETICA MEDICA Ano de publicação: 2023 Tipo de documento: Article País de afiliação: Holanda

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Técnicas de Apoio para a Decisão / Tomada de Decisões Tipo de estudo: Etiology_studies / Prognostic_studies / Risk_factors_studies Limite: Child / Female / Humans / Pregnancy Idioma: En Revista: J Genet Couns Assunto da revista: GENETICA MEDICA Ano de publicação: 2023 Tipo de documento: Article País de afiliação: Holanda