%0 Journal Article
%T An Evidence-Based Model of Multidisciplinary Care for Patients and Families Affected by Classical Congenital Adrenal Hyperplasia due to 21-Hydroxylase Deficiency
%A Traci L Schaeffer
%A Jeanie B Tryggestad
%A Ashwini Mallappa
%A Adam E Hanna
%A Sowmya Krishnan
%A Steven D Chernausek
%A Laura J Chalmers
%A William G Reiner
%A Brad P Kropp
%A Amy B Wisniewski
%J International Journal of Pediatric Endocrinology
%D 2010
%I BioMed Central
%R 10.1155/2010/692439
%X Congenital adrenal hyperplasia (CAH) is an autosomal recessive disorder due most commonly to a deficiency of 21-hydroxylase (21-OH) enzyme action that typically reduces cortisol and aldosterone secretion while simultaneously increasing androgen production [1]. Cortisone therapy to treat CAH was introduced in the early 1950s. Since that time, mortality from CAH has decreased as physicians and other healthcare professionals have gained knowledge and experience with the medical treatment of this disorder [2, 3]. Despite these gains, optimal treatment of CAH remains elusive [4]. A consensus statement in 2002 by members of the Lawson Wilkins Pediatric Endocrine Society (LWPES) and the European Pediatric Endocrine Society (ESPE) attempted to " consider the best practice, to formulate management guidelines, and to consider innovative therapies" related to 21-OH deficiency [4].An important recommendation of the consensus was to organize and maintain a multidisciplinary team for providing medical, surgical, educational, mental health, and family support services to patients and their families [4]. Unfortunately, specific protocols for managing hormone levels during medical therapy, providing education about the pros and cons of feminizing genitoplasty, and how/when to introduce patients to mental health services and support groups were not offered [5]. The goals of this paper are to describe our multidisciplinary team approach to providing evidence-based care to patients and families affected by 21-OH deficiency, and to assess the effectiveness of having such a clinic. Included is an interpretation and translation of the 2002 consensus statement recommendations into clinical practice, education, and social support protocols.The 2002 consensus statement recommends that "A well-organized multidisciplinary team (including specialists in pediatric endocrinology, psychosocial services, pediatric surgery/urology, and genetics) is essential" and "it is important that the coordinato
%U http://www.ijpeonline.com/content/2010/1/692439