Hereditary Diseases
Conditions
Interventions
Decision aid with written and visual information, including value clarification methods (VCMs).
Sponsors
MUMC+/Maastricht University
Eligibility
Inclusion criteria
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
Exclusion criteria: Being pregnant at time of inclusion.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Decisional conflict. This will be assessed by means of the Decisional Conflict Scale (O’Connor, 1995). | — |
Secondary
| Measure | Time frame |
|---|---|
| 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. | — |
Contacts
Public ContactYil Severijns
Maastricht University
Outcome results
None listed