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

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.