A Noncategorical Approach to the Psychosocial Care of Persons with DSD and Their Families

  • David E. Sandberg
  • Tom Mazur
Part of the Focus on Sexuality Research book series (FOSR)


The 2006 Consensus Statement on Management of Intersex Disorders incorporated all variations in sex development under one superordinate term, disorders of sex development (DSD), and called for care to be delivered by integrated teams that include behavioral health providers. This chapter proposes an integrated team care model that is patient and family centered and attempts to balance the dominating perspective that focuses almost exclusively on gender-related aspects of DSD with one that conceptualizes DSD as a congenital and chronic condition, akin to other pediatric conditions. Ideal DSD team structure and functions are described; emphasis is placed on integrating services and enhancing communication among members of the healthcare team and the family. Evaluation and treatment issues are identified, as well as the need for routine reassessment, given that the importance of particular domains (e.g., sharing information, fertility) varies with developmental stage. A strategy for selecting assessment instruments is outlined, and links are provided to databases of psychometrically robust measures of health-related quality of life as well as narrower domains of function. Because confusion remains, distinctions between DSD and transsexualism are delineated. Finally, barriers to the implementation of the proposed model are considered.


Gender Identity Congenital Adrenal Hyperplasia Chronic Medical Condition Gender Dysphoria Gender Assignment 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.



The effort of D.E.S. was supported, in part, by a grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (5R01 HD068138, DSD-Translational Research Network). The content is solely the responsibility of the authors and does not necessarily represent the official views of the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health. We gratefully acknowledge the helpful comments of Melissa Gardner.


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Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  1. 1.Division of Child Behavioral Health and the Child Health and Evaluation Research (CHEAR) Unit, Department of Pediatrics and Communicable DiseasesUniversity of Michigan Medical SchoolAnn ArborUSA
  2. 2.Departments of Psychiatry & PediatricsWomen and Children’s Hospital of Buffalo and the State University of New York at BuffaloBuffaloUSA

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