Room 517-C | Clinical Care of Intersexuality - Emerging Solutions of the Controversy Monday, July 11, 2005 Time: 8:30 AM-10:30 AM |
Clinical Decision-Making and Treatment Models in a State of Flux: Findings from a North American Survey.
Sandberg, David*,1, 1 School of Medicine & Biomedical Sciences, SUNY-Buffalo & The Women's and Children's Hospital of Buffalo, Buffalo, New York, USA
ABSTRACT- Clinical practice in the care of children born with disorders of sexual differentiation (i.e., intersexuality) has become a contentiously debated topic. Since the mid-1950s, the dominant policy has been to assign children born with ambiguous genitalia to the gender that carries the “optimal” prognosis for a stable gender identity, the least possible medical procedures, sexual function (and reproduction, if possible), and an overall positive quality of life. Clinicians and researchers forcefully challenge this strategy by pointing to animal experimental and human clinical research suggesting that prenatal sex hormone exposure in humans determines sexual differentiation of the brain and ultimately both gender identity and behavior. Adding their voice in opposition are social constructionists who dispute the legitimacy of utilizing the appearance of the external genitalia as the ultimate arbiter of an individual’s gender. Finally, there are organizations of former patients who advocate delaying elective genital surgery until the patient can independently provide informed consent. This position is driven by activist members who report diminished genital sensitivity and orgasmic capacity associated with genital surgery. Often overlooked in the debate over factors contributing to quality of life outcomes for individuals with intersexuality is the role of specialized mental health services. Although clinicians and advocacy organizations alike recommend that such services be available at the time of initial diagnosis and beyond, anecdotal evidence suggests this option rarely become a reality. In view of the controversy over the care of children with intersexuality, a review of prevalent clinical practices regarding intersexuality was needed urgently. Key clinical decision makers, pediatric endocrinologists and pediatric urologists were surveyed. Multiple goals of the survey included: (1) assessment of current practice and practice-related beliefs and attitudes; (2) opinions regarding desirable elements of informed consent documents for genital surgery in the child; and (3) characterization of “intersex teams” in North America. Study participants included active members of the Lawson Wilkins Pediatric Endocrine Society and the Society of Pediatric Urology who completed the survey via a password-protected internet website. A total of 763 members of the two professional societies were eligible (533 endocrinologists and 230 urologists) and 433 (301 endocrinologists and 132 urologists; 57%) participated. Employing selected findings from this survey, this presentation illustrates the following points: 1) The apparent marked shift in clinical recommendations for children born with various disorders of sexual differentiation. However, these changes are not substantiated by a coherent body of clinical research evidence; 2) Many clinicians involved in the care of patients with intersex conditions maintain attitudes and hold beliefs that are not evidence-based and may reflect misunderstandings of predictors of quality of life outcomes; 3) The majority of both endocrinologists and urologists agree that informed consent documents should acknowledge that there is an on-going debate as to whether or not surgery is in the best interest of the child, and that in the future, the child may have conflict with their assigned sex and therefore request further surgery to reverse current surgery; and 4) The majority of both clinician groups would like there to be a mental health component to clinical care, but approximately half would want to maintain a ‘gatekeeper’ role. These findings serve as a potential warning that new sets of problems in caring for children with intersex conditions may emerge from a rush to correct perceived errors in previous practice. Moreover, the study emphasized the gap existing in specialized mental health services for families, and later affected individuals themselves. The presentation concludes with the statement of a testable prediction that by reducing emotional stress in families, and providing knowledge enabling them to be informed participants in clinical decision making, the quality of life outcomes for affected individuals and their families will be improved. An on-going effort aimed at testing this general hypothesis in children with congenital adrenal hyperplasia will be discussed. However, even before efficacy data from this and related psychosocial studies are available, it would be prudent to develop guidelines for the training of mental health professionals to fill the existing gap and to develop strategies to overcome the substantial barriers associated with interdisciplinary healthcare, in general, and in particular, under circumstances in which the conditions of interest are relatively rare.
Key words: intersexuality, clinical decision-making, treatment, survey research