McCauley Elizabeth
Seattle Children's Hospital/University of Washington, Seattle, Washington.
Am J Med Genet C Semin Med Genet. 2017 Jun;175(2):293-299. doi: 10.1002/ajmg.c.31563. Epub 2017 Jun 5.
This article reviews practical approaches to talking with parents and youth about Differences in Sex Development (DSD) which are conditions that affect chromosomal, gonadal, or anatomic sexual development, one of the most personal, and in our society, private areas of life. Talking with parents and patients about these conditions can be challenging given the complexity of sexual development and the sensitive nature of the information being shared. Changing approaches to disclosing or communicating information about conditions, such as DSD are reviewed as well as factors leading to revision in the diagnostic nomenclature. Building on these developments, strategies used by an established DSD team to enhance shared decision making and partnership with families and patients are presented followed by examples of how some particularly challenging, but not uncommon clinical situations were approached. The paper concludes by endorsing the importance of understanding the social and cultural needs and beliefs of the parents and patients with DSD to set the stage for effective disclosure of medical facts. To be most useful to parents and youth, medical disclosure needs to include discussion of practical implications and strategies to help families and patients digest, understand, and work with the information provided.
本文回顾了与家长和青少年谈论性发育差异（DSD）的实用方法。性发育差异是指影响染色体、性腺或解剖学性发育的状况，这是生活中最私密的领域之一。鉴于性发育的复杂性以及所分享信息的敏感性，与家长和患者谈论这些状况可能具有挑战性。本文还回顾了关于诸如性发育差异等状况的信息披露或交流方式的变化，以及导致诊断术语修订的因素。基于这些进展，介绍了一个成熟的性发育差异团队为加强与家庭和患者的共同决策及合作而采用的策略，随后列举了一些处理特别具有挑战性但并非罕见的临床情况的实例。本文最后强调，理解性发育差异患者及其家长的社会和文化需求及信念对于有效披露医学事实至关重要。为了对家长和青少年最有帮助，医学信息披露需要包括对实际影响的讨论以及帮助家庭和患者消化、理解并运用所提供信息的策略。
