Summary: Improving Collaboration and Communication in DSD Care Meeting in OKC

June 21, 2012, Oklahoma City

The University of Oklahoma Health Sciences Center’s SUCCEED Clinic and the AIS-DSD Support Group for Women & Families hosted an educational program for patient advocates, policy makers, healthcare providers and researchers that focused on topics such as long-term treatment goals for persons affected with DSD, psychosexual health, genetic testing and patient registry development, psychosocial and peer support, and research ethics. The following represents some highlights of the presentations and discussions. Throughout this collaborative meeting, there were many presentations and discussions involving families and clinicians which will be highlighted here.  (More presentations will be added as we receive them from presenters). 

Charmian Quigley, MBBS (Indiana University Health and Eli Lilly & Company)- DSD: Past, Present, and Future

Dr. Quigley spoke about how DSD were viewed in the past, including terminology and methods of treatment. She gave a history beginning with the first historical references to persons born with atypical sex development and continuing through current accounts and practices. As for the future of DSD care, she focused on some of the shortcomings with the current model of care and talked about how these may be improved.

Richard Auchus, MD (University of Michigan): Now What? Long-Term Treatment Goals for DSD Care

Click here for Dr. Auchus' presentation

Dr. Auchus’ talk focused on the often overlooked area of adult care in DSD. Currently, much of the focus is in treating and studying children and adolescents with DSD, leaving adult health care providers with limited information about what constitutes optimal care for affected adults and an adult population with few resources (educational or medical) to deliver evidence-based health care. Using adults with congenital adrenal hyperplasia as a model for other DSD, Dr. Auchus highlighted some of the issues critical in long-term management, including fertility, bone density, cardiac health, and quality of life. He then went on to emphasize the need for syndrome- specific care, individual specific care, and better transitions from pediatric to adult care.

Arlene Baratz, MD (Medical adviser and board member at AIS-DSD and conference organizer): Don’t Be Afraid: the Real Families of the AIS-DSD Parent’s Support Group

Dr. Baratz spoke about the need for support groups and how they help families cope and move forward. She explained that visits to the doctors are episodic and don’t give a complete look into a parent’s life. Often there are many unanswered questions along with many complex emotions. Support groups give parents a way to discuss these issues while receiving peer support.

Family Perspectives: A mother and father of children with DSD discussed how being a part of a support group helped them to find reassurance and feel part of a community. Families later discussed how important psychosocial support is to them and the difficulties of delayed diagnosis.

Bo Laurent (founder of the Intersex Society of North America): Historical Perspectives

Ms. Laurent spoke about her experiences as a person born with a DSD. She remembered feeling shamed and ignored when she was first diagnosed and had trouble getting experts to speak with her about DSD care. This led her to consider the importance of an effective interdisciplinary team for DSD and how it might function. Solutions are needed that focus not only on surgery, but on coping methods. She then discussed features of an effective team, including mutual accountability and double-loop learning.

Tom Mazur, PsyD (Women & Children’s Hospital of Buffalo) and Amy Wisniewski, PhD (Oklahoma University Medical Center): Why You Really Need a Psychologist on Your Team

Dr. Mazur and Dr. Wisniewski discussed the important role that a psychologist plays on a DSD team. Dr. Mazur talked about the different roles a psychologist plays, including a coordinator, an educator, and a gender specialist. He used case presentations that specifically highlighted each of these roles. Dr. Wisniewski talked about the importance of a psychologist in collecting and interpreting behavioral data. She discussed conducting studies with parents and also studying physicians and healthcare staff and their decision-making processes.

Eric Vilain, MD, PhD (University of California, Los Angeles): Limiting Family Uncertainty: Genetic Approaches for Rare Diagnoses

Dr. Vilain presented on how to improve diagnosis, care, and outcomes through standardization of care including genetic testing. He spoke briefly about the DSD Translational Network project, recently funded by the National Institutes of Health) which aims to create a DSD registry and procedures for standardizing care and, ultimately, best practices in DSD. He then went on to discuss evolving genomic technologies and how targeted sequencing of our genetic make-up is an improvement on current diagnostic procedures.

Lesley Breech, MD (Cincinnati Children’s Medical Center): Psychosexual Health: A Pediatric/Adolescent Gynecologist’s Perspective

Dr. Breech discussed the importance of a gynecologist as an early member of the team for girls and women with DSD.  This specialist is well trained to introduce the topics of sexuality and reproduction from the beginning of care. This  approach will promote realistic expectations and allows the patient to develop an trusting relationship with the gynecologist that is critical to the traisnition from pediatric to adult health care. Gynecologists also help in the decision making and participate in medical and surgical management.

Katharine Baratz Dalke, MD (University of Pennsylvania) - Adolescents with DSD: Discussing Identity, Sex, and Social Media

Dr. Baratz Dalke talked about the challenges of adolescence, including physical, social and cognitive development, and how DSD can complicate this process. For example, as far as social development, DSD can make you dependent on authority figures for medical management, making it difficult to gain independence.  She also discussed the tendency to over-attribute normal adolescent challenges to the fact the person is affected with a DSD.

Young Adult Panel:  A teen and young adult women discussed the distinction between gender identity and condition identity (e.g. having a DSD vs. being intersex).  One member of the panel also brought up the need for there to be open conversation within the medical community about issues of race, socioeconomic status, and non-heterosexual orientations as it pertains to DSD care and assumptions regarding what constitutes a positive outcome for the person.

Discussions: There were two “workshops” during the event, focusing on working as a team for holistic care and future research directions. These sessions involved active discussion among the audience and conference speakers.