What parents are told after prenatal diagnosis of a sex chromosome abnormality: interview and questionnaire study.
OBJECTIVE
To investigate how the prenatal diagnosis of a sex chromosome anomaly is first communicated to parents.


METHODS
Health professionals were interviewed by telephone and the conversation was taped; parents were sent questionnaires at 1 month after diagnosis and those who responded were sent another at 6 months.


METHODS
29 health professionals who had recently informed parents that a sex chromosome anomaly had been identified in an apparently anatomically normal, viable fetus. 23 mothers and partners who had been informed of such a diagnosis.


METHODS
Health professionals' knowledge about sex chromosome anomalies and parents' responses to information provided by health professionals.


RESULTS
Analysis of the telephone interviews identified great variation in what different healthcare professionals know, think, and say about the same sex chromosome anomaly. The small numbers and the low response rate for the questionnaire (39% for women and 30% for men) meant that statistical analysis was not appropriate.


CONCLUSIONS
It is essential for obstetric units to have an established protocol for giving results and for all staff who communicate results to parents to have accurate, up to date information about the condition identified.
North Thames Perinatal Public Health Unit, Department of Medical and Community Genetics, Imperial College of Science, Technology, and Medicine, Northwick Park Site, Harrow HA1 3UJ, UK. l.abramsky@ic.ac.uk
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L
Abramsky
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Hall
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Levitan
T M
TM
Marteau
D000328:Adult; D002983:Clinical Competence; D003142:Communication; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D007621:Karyotyping; D007713:Klinefelter Syndrome / Q000175:diagnosis; D008297:Male; D010290:Parents / Q000523:psychology*; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000523:psychology*; D011368:Professional-Family Relations; D012729:Sex Chromosome Aberrations; D011795:Surveys and Questionnaires; D014342:Truth Disclosure; D014960:X Chromosome