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

Autor: Vivianne C. G. Tjan-Heijnen, Charlotte J. Dommering, Christi J. van Asperen, Margriet Collée, Sander M. J. van Kuijk, Jan C. Oosterwijk, Margreet G. E. M. Ausems, Trudy van der Weijden, J.J.G. Gietel-Habets, Kelly Reumkens, Yil Severijns, Marly H. E. Tummers, Cora M. Aalfs, Liesbeth van Osch, Christine E. M. de Die-Smulders, Marleen Kets, Lizet E. van der Kolk
Přispěvatelé: Human genetics, CCA - Cancer Treatment and quality of life, Targeted Gynaecologic Oncology (TARGON), Damage and Repair in Cancer Development and Cancer Treatment (DARE), RS: GROW - R4 - Reproductive and Perinatal Medicine, Genetica & Celbiologie, Ondersteunend personeel ODB, Health promotion, Klinische Genetica, MUMC+: KIO Kemta (9), Epidemiologie, RS: CAPHRI - R2 - Creating Value-Based Health Care, Interne Geneeskunde, MUMC+: MA Medische Oncologie (9), RS: GROW - R3 - Innovative Cancer Diagnostics & Therapy, Family Medicine, RS: CAPHRI - R6 - Promoting Health & Personalised Care, MUMC+: DA KG Polikliniek (9), Clinical Genetics
Rok vydání: 2021
Předmět:
Zdroj: Journal of Community Genetics, 12, 101-110
Journal of Community Genetics, 12(1), 101-110. SPRINGER HEIDELBERG
Journal of Community Genetics, 12(1), 101-110. Springer Verlag
Journal of community genetics, 12. SPRINGER HEIDELBERG
Journal of Community Genetics
Journal of Community Genetics, 12(1), 101-110. Springer
Journal of Community Genetics, 12, 1, pp. 101-110
Journal of Community Genetics, 12(1), 101-110. Springer-Verlag
Reumkens, K, Tummers, M H E, Severijns, Y, Gietel-Habets, J J G, van Kuijk, S M J, Aalfs, C M, van Asperen, C J, Ausems, M G E M, Collée, M, Dommering, C J, Kets, M, van der Kolk, L E, Oosterwijk, J C, Tjan-Heijnen, V C G, van der Weijden, T, de Die-Smulders, C E M & van Osch, L A D M 2021, ' Reproductive decision-making in the context of hereditary cancer : the effects of an online decision aid on informed decision-making ', Journal of Community Genetics, vol. 12, no. 1, pp. 101-110 . https://doi.org/10.1007/s12687-020-00484-2
ISSN: 1868-310X
DOI: 10.1007/s12687-020-00484-2
Popis: Contains fulltext : 231700.pdf (Publisher’s version ) (Open Access) 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.
Databáze: OpenAIRE
Externí odkaz: