Decision aid development for shared surgical decision-making in differences of sex development: A review of existing aids

Abstract

Background

For some children with differences of sex development (DSD), surgical intervention is a potential treatment option to address risk of neoplasia or potential for difficulties with urination. The shared decision-making (SDM) process can be challenging for patients, families, and clinicians; decision aids (DAs) can assist in this process.

Objective

To conduct a narrative review of literature relevant to the use of DAs in surgical SDM for children with DSD, and to provide a framework for providers to create and implement DAs alongside key stakeholders.

Methods

Primary and secondary literature searches were conducted using PubMed to generate a narrative literature review, which informed a framework incorporating aspects of community-based participatory research.

Results

Six publications were included in the narrative review. Effective DAs were noted to include the following core components: (1) an overview of the process and the family's goals and values, (2) a review of nomenclature, (3) a list of topics and desired depth of discussion for each, (4) a list of questions for the medical team, and (5) management options including non-surgical management. A framework of key components and steps for future DA development was constructed based on the findings of the reviewed publications.

Conclusion

Our framework for a community-based participatory research approach to the development of DAs for surgical SDM for children with DSD provides a critical tool for clinicians to ensure patients and their caregivers are well-informed about their diagnoses and treatment options. Future research should further assess implementation and effectiveness of DAs.