33. Enhancing Clinical Documentation for DSD Patients: A Retrospective Evaluation of a Standardized Physical Exam Template

Abstract

Background

Disorders of Sex Development (DSD) encompass a wide spectrum of phenotypes, making individualized treatment challenging. The DSD Translational Research Network (TRN) has advocated for standardized documentation of physical exam findings to better tailor management. One institution's DSD clinic identified limitations in its existing documentation practices, which hindered comprehensive care. In response, the clinic developed and implemented a standardized physical exam template in the Electronic Medical Record for use in both clinical visits and the operating room, aiming to improve data collection and inform more specific treatment recommendations. The primary objective of this study is to assess the use of a newly implemented template to capture DSD-specific exam findings, in alignment with TRN recommendations. The frequency of documentation of each specific data point on the recommended exam will be evaluated.

Methods

Institutional Review Board approval was obtained. A retrospective chart review was conducted on all patients seen in the DSD clinic, including those who underwent a DSD-related surgeries, from January 2019 to June 2024. Data collected included demographics (age, race), clinical details (hormonal therapies, prior surgeries, diagnosis, karyotype, assigned/reared gender, gender identity), and the presence of gender dysphoria. Eighteen physical exam specifics recommended by the DSD TRN were evaluated, covering measurements related to internal and external genital anatomy. The use of the standardized physical exam template and whether clinical photographs were taken to document these findings were also recorded.

Results

Preliminary data revealed that prior to template implementation, common diagnoses were classical CAH and complete AIS, while the least common was 5-alpha reductase deficiency. Clitoral measurement was the most frequently assessed genital finding, recorded in 60.6% of cases. Documentation of external gonadal evaluation and urogenital sinus was recorded in only 27.2% and 21.2 % of cases respectively. Data collection from post-implementation encounters is ongoing, and we aim to compare the frequency of documentation before and after the template's introduction, along with the use of clinical photographs.

Conclusions

We anticipate that the implementation of a standardized template will significantly improve documentation of DSD-specific physical exam findings and aid in the management of this diverse population. This successful approach can be adapted by other DSD clinics, enhancing research capabilities and improving patient outcomes nationwide.