%0 Journal Article
%T Health-Related Quality of Life, Mental Health and Psychotherapeutic Considerations for Women Diagnosed with a Disorder of Sexual Development: Congenital Adrenal Hyperplasia
%A Matthew A Malouf
%A Arpana G Inman
%A Amanda G Carr
%A Jill Franco
%A Lindsey M Brooks
%J International Journal of Pediatric Endocrinology
%D 2010
%I BioMed Central
%R 10.1155/2010/253465
%X Conventionally referred to as intersex conditions and affecting an estimated 50,000 Americans [1], disorders of sex development (DSD) and best practices of care have remained a controversial topic in the health community. Affecting an estimated 1 in 15,000 births [2], congenital adrenal hyperplasia (CAH) results from an inherited enzyme deficiency leading to an overproduction of adrenal hormones. In karyotpyic females (46, XX) this elevated level of androgenic hormones impacts development in utero by virilizing or masculinizing/defeminizing the genitalia [3]. Since CAH is often first treated by pediatric endocrinologists, surgeons, and urologists, research on outcomes and interventions has primarily centered on issues most clinically relative to these fields, specifically concerns related to sex of rearing, psychosexual outcomes thought to influence sex assignment such as gendered play in childhood, gender identity, and sexual orientation (see [4], for a review) and on ethical considerations related to treatment [5]. Thus, while CAH's impact on sexual and psychosexual development is well-established in the literature, its impact on health-related quality of life (HRQL), including mental health outcomes, is less clear.In recent years, a multidisciplinary approach for the treatment of DSD has been recommended to also include gynecological, genetic, neonatal, psychological, ethical, and social work specialists working with children, adults, and their families [6]. Specific to mental health specialists, psychotherapeutic recommendations have been proposed [7], yet little is known about what interventions are most efficacious or what specific quality of life and mental health concerns are most salient for women diagnosed with CAH. Thus the aim of this study was to determine the manner in which having CAH impacts HRQL (defined as physical, functional, emotional, and social well-being), mental health experience, and counseling needs for women diagnosed with this condition.
%U http://www.ijpeonline.com/content/2010/1/253465