Outcomes and effectiveness of decision aids for families affected by hereditary cancer syndromes: A scoping review.

Objective: In the past 15 years, numerous decision aids (DAs) have been developed to assist families affected by hereditary cancer syndromes in decision-making for managing inheritance and cancer risk. We identified the range and characteristics of DAs, focusing on their development stage according to guideline recommendations, their outcomes, and effectiveness.

Methods: A comprehensive search was conducted in MEDLINE, EMBASE, Cochrane, CINAHL, and PsycINFO, along with manual searches. Eligible articles reported DAs for supporting families affected by hereditary cancer syndromes, published in English from inception to July 2024. Quality was assessed using the Mixed Methods Appraisal Tool.

Results: From 15,066 records, 32 studies with a moderate risk of bias, reporting 23 unique DAs, were identified. Most DAs targeted women (69.6%) with hereditary breast and ovarian cancer syndrome (73.9%) in North America and Europe (81.3%), primarily supporting decisions on cancer risk-reduction strategies (56.5%) and genetic testing/counseling (47.8%). Only four DAs were consistent with guideline-recommended development process, including prototype development, alpha- and beta-testing. Development and alpha-testing outcomes included user experience, understandability, and psychological impact. Beta-testing evaluated decision-making capacity, quality of the decision-making process, psychological impact, and impact on decisions. DAs consistently improved decision-making capacity and quality of the decision-making process but showed variable effects on psychological outcomes and actual decision in risk-management.

Conclusion: DAs are under-developed for genetic, racial, or gender minorities, according to guideline-recommended development process. Future research should develop DAs for broader populations and clarify their effectiveness, particularly regarding psychological outcomes.