Decision support for couples with hereditary diseases and child wish: weighing pros and cons of reproductive options regarding transmission of gene mutations.

Conditions: Hereditary Diseases

Registration Number: NL-OMON25214

Lead Sponsor: MUMC+/Maastricht University

Brief Summary: We expect to write one publication about the RCT regarding the short- and long term effects of the decision aid on the primary and secondary outcome measures.

Detailed Description: Not available

Recruitment & Eligibility

Status: Pending

Sex: Not specified

Target Recruitment: 256

Inclusion Criteria

One of the partners has an autosomal dominant hereditary condition, an X-linked condition, a chromosomal anomaly or both partners are carrier of an autosomal recessive condition for which all reproductive options are available in the Netherlands, participants should have an active child wish (within 5 years), and the female partner should be of reproductive age (18-41 years). Additionally, couples should have sufficient knowledge of the Dutch language and ample experience with the use of computers and internet.

Exclusion Criteria

Being pregnant at time of inclusion.

Study & Design

Study Type: Interventional

Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Decisional conflict. This will be assessed by means of the Decisional Conflict Scale (O’Connor, 1995).

Secondary Outcome Measures

Name	Time	Method
Secondary outcome measures include knowledge and realistic expectations of different reproductive options (e.g. accuracy of perceived risks), deliberation (van den Berg et al., 2006), attitude , joint informed decision-making and preparation for decision making (Bennett et al., 2010). The Multidimensional Measure of Informed Choice (MMIC; Marteau et al., 2001) will be used to assess informed choice.