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Online decision support for persons having a genetic predisposition to cancer and their partners during reproductive decision-making.
Reumkens, Kelly; Tummers, Marly H E; 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, C 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.
Afiliação
  • 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.
  • Gietel-Habets JJG; Department of Clinical Genetics, Maastricht University Medical Centre+, Maastricht, The Netherlands.
  • van Kuijk SMJ; GROW School for Oncology and Developmental Biology, Maastricht University Medical Centre+, Maastricht, The Netherlands.
  • Aalfs CM; Department of Clinical Genetics, Maastricht University Medical Centre+, Maastricht, The Netherlands.
  • van Asperen CJ; GROW School for Oncology and Developmental Biology, Maastricht University Medical Centre+, Maastricht, The Netherlands.
  • Ausems MGEM; Department of Clinical Epidemiology and Medical Technology Assessment, Maastricht University Medical Centre+, Maastricht, The Netherlands.
  • Collée M; Department of Clinical Genetics, Academic Medical Centre, Amsterdam, The Netherlands.
  • Dommering CJ; Department of Clinical Genetics, Leiden University Medical Center, Leiden, The Netherlands.
  • Kets CM; Division of Biomedical Genetics, Department of Genetics, University Medical Center Utrecht, Utrecht, The Netherlands.
  • van der Kolk LE; Department of Clinical Genetics, Erasmus University Medical Center, Rotterdam, The Netherlands.
  • Oosterwijk JC; Department of Clinical Genetics, VU University Hospital, Amsterdam, The Netherlands.
  • Tjan-Heijnen VCG; Department of Human Genetics, Radboud University Medical Center Nijmegen, Nijmegen, The Netherlands.
  • van der Weijden T; Family Cancer Clinic, Netherlands Cancer Institute, Amsterdam, The Netherlands.
  • de Die-Smulders CEM; Department of Genetics, Groningen University Medical Center, University of Groningen, Groningen, The Netherlands.
  • van Osch LADM; GROW School for Oncology and Developmental Biology, Maastricht University Medical Centre+, Maastricht, The Netherlands.
J Genet Couns ; 28(3): 533-542, 2019 06.
Article em En | MEDLINE | ID: mdl-30629779
ABSTRACT
A nationwide pretest-posttest study was conducted in all clinical genetic centres in the Netherlands, to evaluate the effects of an online decision aid to support persons who have a genetic predisposition to cancer and their partners in making an informed decision regarding reproductive options. Main outcomes (decisional conflict, knowledge, realistic expectations, level of deliberation, and decision self-efficacy) were measured before use (T0), immediately after use (T1), and at 2 weeks (T2) after use of the decision aid. Paired sample t tests were used to compute differences between the first and subsequent measurements. T0-T1 and T0-T2 comparisons indicate a significant reduction in mean decisional conflict scores with stronger effects for participants with high baseline decisional conflict. Furthermore, use of the decision aid resulted in increased knowledge levels and improved realistic expectations. Level of deliberation only increased for participants with lower baseline levels of deliberation. Decision self-efficacy increased for those with low baseline scores, whereas those with high baseline scores showed a reduction at T2. It can be concluded that use of the decision aid resulted in several positive outcomes indicative of informed decision-making. The decision aid is an appropriate and highly appreciated tool to be used in addition to reproductive counseling.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Participação do Paciente / Reprodução / Sistemas On-Line / Técnicas de Apoio para a Decisão / Predisposição Genética para Doença / Neoplasias Tipo de estudo: Prognostic_studies Limite: Adult / Female / Humans / Male País/Região como assunto: Europa Idioma: En Revista: J Genet Couns Assunto da revista: GENETICA MEDICA Ano de publicação: 2019 Tipo de documento: Article País de afiliação: Holanda

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Participação do Paciente / Reprodução / Sistemas On-Line / Técnicas de Apoio para a Decisão / Predisposição Genética para Doença / Neoplasias Tipo de estudo: Prognostic_studies Limite: Adult / Female / Humans / Male País/Região como assunto: Europa Idioma: En Revista: J Genet Couns Assunto da revista: GENETICA MEDICA Ano de publicação: 2019 Tipo de documento: Article País de afiliação: Holanda