Progress at Rush University Medical Center (Chicago)

We invited this news post from Claire Sorenson, a Registered Nurse in the Neonatal Intensive Care Unit at Rush University Medical Center in Chicago. Claire was responsible for producing the Quality Care Indicators list for disorders of sex development (DSD) care now available at the Accord Alliance site. She is currently pursuing her PhD in Nursing with a dual focus on clinical education and on quality of life outcomes in those with DSD.


Each year, as pediatric residents rotate through our Neonatal Intensive Care Unit (NICU) at Rush University Medical Center in Chicago, where I am a nurse, they are provided a handbook that serves as a quick-guide for common problems, procedures/protocols, lab values, and other important information. Currently, there is a team working to update this guide, and I'm excited to report that they have added references to Accord Alliance's DSD Clinical Guidelines and Parents' Handbook as well to as the associated Quality Care Indicators (QCI). In addition to these references, they have included some of the most important points from the QCI and DSD Guidelines. My name will also be listed as a resource for DSD/intersex issues.

This is exciting because it makes the information for DSD resources readily available to nurse practitioners and residents (residents often cling to these little yellow books as their life-lines during rounds) and makes consultations related to DSD more routinized, potentially lessening the stigma and confusion often surrounding these concerns.

I believe that the Quality Care Indicators project I worked on in conjunction with representatives of Accord Alliance will continue to help people within hospital administrations begin to grasp the importance of dealing in a more organized fashion with the complexities of DSD. I decided to work on the QCI project because there is some really great information now coming out about outcomes following interventions related to DSD. Even though the DSD Guidelines and the Chicago Consensus Statement are available to clinicians, too few still know they exist, and even fewer know how to put them into practice.
The QCI list basically boils down the DSD Guidelines (a 63-page document) into an easy-to-follow checklist. The hope is that, partly through the encouragement of administrators and colleagues, clinicians will be able to begin to incorporate this checklist into the management of DSD and maybe even trigger some productive comparison among medical centers, ultimately improving care across the board.


I thought this project was particularly interesting because, as a nurse at the bedside, I get to see exactly how lost clinicians sometimes feel in caring for these children and their families. One of my goals as I finish my doctorate is to bring all of this great research to the bedside in a very manageable and usable manner; the QCI project was a way to do this with the DSD Guidelines.


I am currently drafting an article on the importance of and need for quality care indicators in DSD care. This article will discuss the potential of QCI for shaping the management of DSD and provide some guidance as to how to incorporate the Guidelines and QCI into clinical practice. Publishing the article, along with the QCI, in a well-known pediatric practice journal will publicize the work done on DSD management and outcomes, as well as direct clinicians towards valuable resources like the Accord Alliance website.

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