There is an association between whether or not a woman terminates a pregnancy affected by an unfamiliar fetal anomaly and the professional background of the health professional providing post-diagnostic counselling. The causal nature of this association remains to be determined.
Objective: To describe and compare the information obstetricians and geneticists in five European countries report they would give following the prenatal diagnosis of Klinefelter syndrome. Methods: 388 obstetricians and 269 geneticists from Germany, the Netherlands, Portugal, Spain and the UK completed a brief questionnaire assessing two variables: the information they reported providing to parents following the prenatal diagnosis of Klinefelter syndrome (categorized as positive or negative); and their perceptions of the quality of life with the condition. Results: Geneticists were more likely than obstetricians to report providing more positive than negative information about Klinefelter syndrome than equal amounts of positive and negative information or more negative than positive information about the condition (excess positive information). Regardless of specialty, the information that health professionals reported providing was predicted by their perceptions of the quality of life with the condition, and the country from which they came. Those perceiving quality of life as greater were more likely to provide an excess positive information, as were health professionals from Germany and the UK. Conclusions: These results suggest that the information parents across Europe receive after the prenatal diagnosis of Klinefelter syndrome varies according to the specialty and country of the health professionals consulted, and their perceptions of quality of life with the condition. This variation seems to reflect personal, cultural and professional differences between health professionals.
In the Netherlands, perinatal audit is well supported by all groups of caregivers. It reveals usable facts and findings for the quality assessment of perinatal care. This audit showed that in 9% of the cases perinatal death was related to SSF and potentially avoidable. However, immediate reporting of cases of perinatal death apart from regular registration in the perinatal database proved to be inaccurate. Once a nationwide audit program is realized, in which data from the different caregivers will be collected in a single database instead of collection by linkage afterwards, this problem should be solved. Local audits will start from 2009. These audits will assess mortality cases within their respective areas and may initiate adjustments for perinatal care and optimize the quality of care and inter-professional collaboration. Yearly nationwide audits will focus on specific items (e.g. term or post-term deliveries) and may well offer an opportunity for the development or adjustment of national guidelines.
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