Masters Thesis

Good practices in differences/disorders of sex development

At present there are no clinical practice guidelines (CPG) for differences/disorders of sex development (DSD). CPG have the capacity to spur quality improvement and standardization of care. The present study proposes 11 “good practices” to encourage development of DSD-specific CPG. Good practices are those that, even in the absence of direct evidence, are confidently held to do substantially more good than harm. The​ ​good practices derive from three key sources: DSD care guidance documents, a prior benchmarking survey of North American DSD clinics, and expert input of a DSD stakeholder organization, Accord Alliance. A survey was developed to measure current alignment with these good practices. Completed surveys were obtained from 14 out of 45 identified clinical sites. While endorsement of the good practices was generally high among responding sites, several leads for potential improvement were also apparent within the areas of care coordination, psychosocial expertise, support resources, patient education, shared decision making, examination protocols, continuing education, and research efforts. The site-specific results of the present survey will be published on the Accord Alliance website. Accord Alliance intends to administer an evolving form of this survey at regular intervals. The present study is intended as a measure of current practice, a platform for professional dialog within and between care sites, and motivation for widespread progress.

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