TY - JOUR
T1 - The development of an online decision aid to support persons having a genetic predisposition to cancer and their partners during reproductive decision-making
T2 - a usability and pilot study
AU - Reumkens, Kelly
AU - Tummers, Marly H. E.
AU - Gietel-Habets, Joyce J. G.
AU - van Kuijk, Sander M. J.
AU - Aalfs, Cora M.
AU - van Asperen, Christi J.
AU - Ausems, Margreet G. E. M.
AU - Collee, Margriet
AU - Dommering, Charlotte J.
AU - Kets, C. Marleen
AU - van der Kolk, Lizet E.
AU - Oosterwijk, Jan C.
AU - Tjan-Heijnen, Vivianne C. G.
AU - van der Weijden, Trudy
AU - de Die-Smulders, Christine E. M.
AU - van Osch, Liesbeth A. D. M.
N1 - Funding Information:
Acknowledgements The work in this study was conducted to fulfill a degree requirement and was funded by the Dutch Cancer Society (Alpe d’HuZes; Grant Number UM2013-6374).
Publisher Copyright:
© 2018, The Author(s).
PY - 2019/1
Y1 - 2019/1
N2 - 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 2weeks 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.
AB - 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 2weeks 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.
KW - Reproductive decision-making
KW - Counselling
KW - Decision aid
KW - Hereditary cancer
KW - Informed decision-making
KW - Oncology
KW - Patient education
KW - BREAST
KW - WOMEN
KW - DIAGNOSIS
KW - FAMILIES
KW - CARRIERS
KW - OPTIONS
KW - COUPLES
KW - BRCA1
KW - RISK
U2 - 10.1007/s10689-018-0092-4
DO - 10.1007/s10689-018-0092-4
M3 - Article
SN - 1389-9600
VL - 18
SP - 137
EP - 146
JO - Familial Cancer
JF - Familial Cancer
IS - 1
ER -