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
Publication date
2019-01
Authors
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
Editors
Advisors
Supervisors
Document Type
Article
Metadata
Show full item recordCollections
License
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.
Keywords
Counselling, Decision aid, Hereditary cancer, Informed decision-making, Oncology, Patient education, Reproductive decision-making, Decision Making, Neoplastic Syndromes, Hereditary/genetics, Genetic Predisposition to Disease, Humans, Decision Support Techniques, Reproduction/genetics, Male, Health Knowledge, Attitudes, Practice, Genetic Counseling/methods, Pilot Projects, Adult, Female, Internet, Genetics(clinical), Genetics, Oncology, Cancer Research, Research Support, Non-U.S. Gov't, Journal Article, Evaluation Studies
Citation
Reumkens, K, Tummers, M H E, 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, C 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 2019, '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', Familial Cancer, vol. 18, no. 1, pp. 137-146. https://doi.org/10.1007/s10689-018-0092-4