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 - Collée, 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 - 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 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.
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 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.
KW - Counselling
KW - Decision aid
KW - Hereditary cancer
KW - Informed decision-making
KW - Oncology
KW - Patient education
KW - Reproductive decision-making
KW - Decision Making
KW - Neoplastic Syndromes, Hereditary/genetics
KW - Genetic Predisposition to Disease
KW - Humans
KW - Decision Support Techniques
KW - Reproduction/genetics
KW - Male
KW - Health Knowledge, Attitudes, Practice
KW - Genetic Counseling/methods
KW - Pilot Projects
KW - Adult
KW - Female
KW - Internet
UR - http://www.scopus.com/inward/record.url?scp=85047800840&partnerID=8YFLogxK
U2 - 10.1007/s10689-018-0092-4
DO - 10.1007/s10689-018-0092-4
M3 - Article
C2 - 29846879
AN - SCOPUS:85047800840
SN - 1389-9600
VL - 18
SP - 137
EP - 146
JO - Familial Cancer
JF - Familial Cancer
IS - 1
ER -