Chapter 1 INTRODUCTION

PURPOSE OF THIS DOCUMENT

The purpose of these guidelines is to assist health care professionals in the provision of diagnosis, treatment, education, and support to children born with disorders of sex development (DSDs) and to their families. While debates about the best way to care for patients with DSDs continue,[Conte2003 Frader2004 Eugster2004 Greenberg2003 Hermer2002 Blizzard2002 Creighton2004] this handbook offers individuals and institutions a model aimed at minimizing the potential for harm to patients and their families. It is therefore also designed to reduce the potential for liability and to improve patient follow-up.

These guidelines begin with the commonly-held assumption that the goal of DSD treatment is the long-term physical, psychological, and sexual well-being of the patient.[Berenbaum2003 Berenbaum2004a Hines2003 Horowitz1992 Krege2000 Kuhnle1995 Mazur2004 Zucker2004] This approach is therefore termed “patient-centered.”

What follows is largely an ideal treatment scenario involving a well-organized, well-trained, and institutionally-supported multidisciplinary health care team. The authors of this document hope that it will be used to refine, to foster, and even to create such ideal scenarios, but also recognize that the reality for many health care professionals may be challenging.

It is critical, therefore, to emphasize that it is more important to focus on providing patient-centered care than to create and maintain a multidisciplinary team precisely as described in the following.[Meyer-Bahlburg2004] Although dedicated multidisciplinary teams which focus on patients’ psychosocial well-being may be more likely than alternatives to provide optimal care, a dedicated multidisciplinary team is neither a guarantor of nor a necessity of patient-centered care for DSDs.[Diamond1997]

The intended audience for this handbook is health care professionals who provide care to pediatric patients with DSDs. Nonetheless, we expect that this handbook will also be read by health professional students, educators, parents of children with DSDs, and adults with DSDs. For this reason, this handbook occasionally repeats points which would be obvious to the specialist clinician. The authors do not intend to be condescending to the specialist, but rather to be helpful to those readers less familiar with the specialist’s work.