Abstract
Disorders of sex development (DSD) are “congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical” [1]. The conditions subsumed under this superordinate term are individually rare but, in the aggregate, have an estimated incidence of 0.5–1% [2]. Clinical management of DSD (formerly referred to as “intersex”) had stood largely unchallenged from the mid-1950s until the early 1990s. At that time, criticism of various aspects of clinical practice in DSD emerged from several perspectives [3], perhaps most notably from affected adults who expressed dissatisfaction with their treatment [4, 5]. A confluence of advances in the diagnosis of DSD and appraisal of surgical and psychological outcomes has led to a reexamination of assumptions and clinical practice.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
References
Lee PA, Houk, Christopher P., Ahmed, S. Faisal, Hughes, Ieuan A., in collaboration with the participants in the International Consensus Conference on Intersex. Consensus statement on management of intersex disorders. Pediatrics. 2006;118(2):e488–e500.
Vilain E. Disorders of sex development: of mice and men. Biology of Reproduction. 2009;81:Abstract 121.
Stein MT, Sandberg DE, Mazur T, Eugster E, Daaboul J. A newborn infant with a disorder of sexual differentiation. Journal of Developmental & Behavioral Pediatrics. 2003;24:115–119.
Kessler SJ. Lessons from the Intersexed. Piscataway, NJ: Rutgers University Press; 1998.
Chase C. What is the agenda of the intersex patient advocacy movement? Endocrinologist. 2003;13(3):240–242.
Hines M, Brook C, Conway GS. Androgen and psychosexual development: core gender identity, sexual orientation, and recalled childhood gender role behavior in women and men with congenital adrenal hyperplasia (CAH). Journal of Sex Research. 2004;41(1):75–81.
Berenbaum SA, Duck SC, Bryk K. Behavioral effects of prenatal versus postnatal androgen excess in children with 21-hydroxylase-deficient congenital adrenal hyperplasia. Journal of Clinical Endocrinology & Metabolism. 2000;85(2):727–733.
Collaer ML, Hines M. Human behavioral sex differences: a role for gonadal hormones during early development? Psychological Bulletin. 1995;118(1):55–107.
Stephanie A. Stout, Margarita Litvak, Natashia M. Robbins, and David E. Sandberg, “Congenital Adrenal Hyperplasia: Classification of Studies Employing Psychological Endpoints,” International Journal of Pediatric Endocrinology, vol. 2010, Article ID 191520, 11 pages, 2010. doi:10.1155/2010/191520
Gehlert S. Communication in health care. In: Gehlert S, Browne T, eds. Handbook of Health Social Work. Hoboken, NJ: Wiley; 2006:252–281.
Lambert B, Street R, Cegala D, Smith D, Kurtz S, Schofield T. Provider-patient communication, patient-centered care, and the mangle of practice. Health Communication. 1997;9(1):27–43.
Charles C, Gafni A, Whelan T. Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model. Social Science & Medicine. 1999;49(5): 651–661.
Vilain E, Sandberg DE. Disorders of sex development: nomenclature [Letter to the Editor]. Growth, Genetics & Hormones. 2009;25(1):9–10.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2011 Springer Science+Business Media, LLC
About this paper
Cite this paper
Asciutto, A.J., Haddad, E., Green, J., Sandberg, D.E. (2011). Patient-Centered Care: Caring for Families Affected by Disorders of Sex Development. In: New, M., Simpson, J. (eds) Hormonal and Genetic Basis of Sexual Differentiation Disorders and Hot Topics in Endocrinology: Proceedings of the 2nd World Conference. Advances in Experimental Medicine and Biology, vol 707. Springer, New York, NY. https://doi.org/10.1007/978-1-4419-8002-1_30
Download citation
DOI: https://doi.org/10.1007/978-1-4419-8002-1_30
Published:
Publisher Name: Springer, New York, NY
Print ISBN: 978-1-4419-8001-4
Online ISBN: 978-1-4419-8002-1
eBook Packages: Biomedical and Life SciencesBiomedical and Life Sciences (R0)