Team Building at the University of Michigan

The 2006 "Chicago Consensus" on the treatment of disorders of sex development (DSD) in children, endorsed by the American Academy of Pediatrics (and available by clicking here), recommends interdisciplinary team care. Creating a DSD team might sound straightforward, particularly at a children's hospital where the various specialties are already represented. But in reality, it's far from being simple.

As in any endeavor involving specialists with varied training and expertise, the challenge is defining "success" for the patient and the family in a way that transcends the discipline of any single team member. Most importantly, only the patient and his or her family are entitled to declare success. We must hone our approaches so that they are tailored to the needs of each person with a DSD and the social context in which she or he lives.

At the University of Michigan's Mott Children's Hospital, our DSD team includes specialists from pediatric endocrinology, genetics, urology, general surgery, plastic surgery, adolescent gynecology, pathology, psychology, social work and child life. This is the not the final list of where we plan to go, but it represents where we are currently. (For an ideal list of specialties, see Accord Alliance's page on Quality Care Indicators for DSD by clicking here.)

Our team meets monthly to discuss the coordination of care for persons with DSD and their families and holds a monthly clinic at which all specialists relevant to the individual's care are present to meet with the patient and the family. This interdisciplinary clinic eliminates much of the need for multiple trips to the hospital but, more importantly, ensures that the healthcare providers are "on the same page" when it comes to communication with the family.

The University of Michigan DSD team is involved in a wide range of research including: understanding parental decision-making regarding genital surgery in infants and young children; the development of quality of life questionnaires for parents that focus on issues specific to and shared by young patients with DSD and their families, which are not otherwise covered by generic health-related quality of life measures; development of Web-based educational tools for healthcare providers and parents of young children with congenital adrenal hyperplasia (the most common cause of DSD in persons with XX sex chromosomes) who have been identified through newborn screening; tracking the influence of individual and family characteristics on the psychological development and quality of life of persons with DSD; investigation into more complete identification of the genetic causes of DSD.

Finally, our team will soon be among several others participating in a translational research network for DSD supported by the National Institutes of Health. Goals of the network include closing the gap in our knowledge of the genetic causes of DSD, standardization of clinicians' descriptions of the biological and anatomic aspects of DSD, creation of a uniform psychosocial assessment of the patient and family along with evidence-based interventions as indicated, and creation of practice guidelines for the clinical management of DSD, including strategies to optimize the performance of interdisciplinary teams in delivering patient- and family-centered care. We are truly excited and hopeful about these major collaborations.

Interestingly, what many expected to be the greatest challenge posed by the Chicago Consensus was overcome at our institution without much difficulty. This is the issue of financial support of mental health services. Our healthcare system at Mott Children's Hospital is covering the costs of the psychologist and social worker to ensure that the barriers posed by gaps in health insurance do not prevent behavioral health services from being integral to the model of care as outlined in the Chicago Consensus.

Of course, we still face the practical challenges of coordinating the schedules of providers from multiple divisions and departments so that the team can function in an optimal fashion. In the end, the biggest challenge in DSD care, in my opinion, is creating a team that helps eliminate feelings of shame and desire for secrecy that commonly accompany DSD.

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