Clinical Decision-Making and Treatment Models in a State of Flux: Findings From a North American Survey.

Clinical Decision-Making and Treatment Models in a State of Flux: Findings From a North American Survey, David E. Sandberg, SUNY-Buffalo and The Women's and Children's Hospital of Buffalo 

In view of the controversy over the care of children with intersexuality, a review of prevalent clinical practices regarding intersexuality was needed urgently. I surveyed key clinical decision-makers, pediatric endocrinologists, and pediatric urologists. Goals of the survey included (a) assessment of current practice and practice-related beliefs and attitudes; (b) opinions regarding desirable elements of informed consent documents for genital surgery in the child; and (c) 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, we found an 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. We also found that 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. We found that the majority of both endocrinologists and urologists agreed that informed consent documents should acknowledge that there is an ongoing 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. 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. By reducing emotional stress in families and providing knowledge enabling them to be informed participants in clinical decision-making, we can improve the quality of life outcomes for affected individuals and their families. However, 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.