Decision support for people with hereditary cancer who wish to have children

In this Alpe d’HuZes project an online decision aid has been developed for people with hereditary cancer who wish to have children. Decision aids are information packages such as brochures or interactive websites, designed to help people choose between various medical options. The decision aid provides a clear insight into available reproductive options (e.g. PGD, prenatal diagnosis or natural conception) and the advantages and disadvantages of each option (e.g. the duration of PGD procedures and hormone therapy), and will assist patients to determine the importance they attach to the various consequences of the various options.

Decision aids may contribute to patients having more realistic expectations with regard to their medical options, feeling more involved in the decision-making process and feeling more satisfied with their eventual choice. Decision aids can be used at home (to prepare for a consultation) or in the doctor’s surgery (to improve patients’ communication with their doctor). They will help patients assume greater responsibility for the decisions made during the patient care process.

The decision aid can be used by couples who wish to have children, but who have an increased risk of giving birth to a child with hereditary cancer. They will be able to use it to choose the reproductive option most appropriate in their personal circumstances and reduce (or even eliminate) negative feelings like uncertainty, regret, guilt and internal conflict, both during the decision process and afterwards.

Initially, the decision aid was developed for couples at high risk of giving birth to a child with cancer, but it will serve as a blueprint for reproductive options decision aids for people who are at an increased risk of passing on other hereditary disorders.

Supervisors: prof. Christine de Die-Smulders, Liesbeth van Osch, PhD
Researcher: Kelly Reumkens