Is counselling for CCAM that difficult? Learning from parental experience

摘要

Objective: 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.Methods: 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.Results: 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.Conclusions: 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.