Aite Lucia, Zaccara Antonio, Trucchi Alessandro, Nahom Antonella, Capolupo Irma, Mobili Luisa, Bagolan Pietro
Newborn Surgery Unit Bambino Gesù Children's Hospital P.zza S. Onofrio, 4 00164 Rome, Italy.
J Prenat Med. 2011 Jul;5(3):65-8.
Cystic adenomatoid malformations (CCAM) are relatively rare developmental abnormalities of the lung. Despite outcome is usually benign, parents often exhibit high anxiety level. The purpose of the present study was to collect parents'subjective experience of communication of diagnosis when expecting a fetus with CCAM.
In the period ranging between 2004 to 2007 all couples referred to our hospital for prenatal suspicion of CCAM, were contacted to participate in the study by means of a questionnaire.
Twenty-seven couples returned fully completed questionnaire and form the object of this study. 13/27 couples were recommended pregnancy termination.MAJOR RISKS PRESENTED WERE: fetal distress (27/27), intrauterine death (16/27), death at birth (12/27).THE MOST DISTRESSING MOMENTS WERE: communication of diagnosis and the time lag between communication of diagnosis and consultation with the surgeon.
Despite CCAM carries a favourable prognosis, couples often appear to receive incomplete information with risk of fetal distress and demise prevailing over survival rate and long term outcome. To provide the couple with the most accurate information concerning the anomaly and the associated prognosis to make informed decision a referral to a tertiary pediatric surgery unit should be made as soon as possible.
肺囊性腺瘤样畸形（CCAM）是相对罕见的肺部发育异常。尽管其预后通常良好，但患儿父母往往表现出高度焦虑。本研究的目的是收集怀有CCAM胎儿的父母在得知诊断结果时的主观交流体验。
在2004年至2007年期间，所有因产前怀疑患有CCAM而转诊至我院的夫妇，均通过问卷调查的方式被联系参与本研究。
27对夫妇返回了完整填写的问卷，并成为本研究的对象。27对夫妇中有13对被建议终止妊娠。主要风险包括：胎儿窘迫（27/27）、宫内死亡（16/27）、出生时死亡（12/27）。最令人痛苦的时刻是：诊断结果的告知以及诊断结果告知与外科医生会诊之间的时间间隔。
尽管CCAM预后良好，但夫妇们似乎常常收到不完整的信息，胎儿窘迫和死亡的风险高于存活率和长期预后。为了给夫妇提供有关该异常情况及相关预后的最准确信息，以便他们做出明智的决定，应尽快将其转诊至三级小儿外科单位。
