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Familial Cancer
Published in: Familial Cancer 1/2019

Open Access 01-01-2019 | Original Article

The development of an online decision aid to support persons having a genetic predisposition to cancer and their partners during reproductive decision-making: a usability and pilot study

Authors: Kelly Reumkens, Marly H. E. Tummers, Joyce J. G. Gietel-Habets, Sander M. J. van Kuijk, Cora M. Aalfs, Christi J. van Asperen, Margreet G. E. M. Ausems, Margriet Collée, Charlotte J. Dommering, C. Marleen Kets, Lizet E. van der Kolk, Jan C. Oosterwijk, Vivianne C. G. Tjan-Heijnen, Trudy van der Weijden, Christine E. M. de Die-Smulders, Liesbeth A. D. M. van Osch

Published in: Familial Cancer | Issue 1/2019

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Abstract

An online decision aid to support persons having a genetic predisposition to cancer and their partners during reproductive decision-making was developed. A two-phase usability test was conducted among 12 couples (N = 22; 2 persons participated without their partner) at risk for hereditary cancer and 15 health care providers. Couples and health care providers expressed similar suggestions for improvements, and evaluated the modified decision aid as acceptable, easy to use, and comprehensible. The final decision aid was pilot tested (N = 16) with paired sample t tests comparing main outcomes (decisional conflict, knowledge, realistic expectations regarding the reproductive options and decision self-efficacy) before (T0), immediately (T1) and 2 weeks after (T2) use of the decision aid. Pilot testing indicated decreased decisional conflict scores, increased knowledge, and improved realistic expectations regarding the reproductive options, at T1 and T2. No effect was found for couples’ decision self-efficacy. The positive findings during usability testing were thus reflected in the pilot study. The decision aid will be further evaluated in a nationwide pretest–posttest study to facilitate implementation in the onco-genetic counselling setting. Ultimately, it is expected that the decision aid will enable end-users to make an informed decision.
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Metadata
Title
The development of an online decision aid to support persons having a genetic predisposition to cancer and their partners during reproductive decision-making: a usability and pilot study
Authors
Kelly Reumkens
Marly H. E. Tummers
Joyce J. G. Gietel-Habets
Sander M. J. van Kuijk
Cora M. Aalfs
Christi J. van Asperen
Margreet G. E. M. Ausems
Margriet Collée
Charlotte J. Dommering
C. Marleen Kets
Lizet E. van der Kolk
Jan C. Oosterwijk
Vivianne C. G. Tjan-Heijnen
Trudy van der Weijden
Christine E. M. de Die-Smulders
Liesbeth A. D. M. van Osch
Publication date
01-01-2019
Publisher
Springer Netherlands
Published in
Familial Cancer / Issue 1/2019
Print ISSN: 1389-9600
Electronic ISSN: 1573-7292
DOI
https://doi.org/10.1007/s10689-018-0092-4

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