Objective: To describe how prenatal screening and diagnostic test results are communicated to primary care health professionals.
Design: Postal questionnaire.
Setting: Primary care practices across London, East Anglia, the Southeast and Southwest of England.
Participants: 714 community-based health professionals (GPs, midwives and health visitors) identified by 247 women (participants in a study of experiences after a positive prenatal diagnosis) as members of their primary care team.
Main outcome measures: Description of how information about prenatal screening and diagnostic test results is communicated to health professionals working in the primary care team. Participants' views about the timeliness and sufficiency of the information they are given.
Results: 131 GPs, 143 midwives and 151 health visitors returned questionnaires, an overall response rate of 60.4%. Sixteen percent of primary care professionals reported that they were not usually informed of high-risk results after serum screening for Down's syndrome. Twenty eight percent were either not usually told about the possibility of abnormalities detected on ultrasound or only heard of such abnormalities from the woman herself. Even when informed, 28% of midwives and GPs did not know what action they were expected to take. Information about confirmed abnormalities is not always communicated to primary care. Only 29% were told soon enough about diagnosed abnormalities and only 17% of health professionals reported that the information they were given was always sufficient to allow them to discuss issues with their patients. The presence of specialist screening coordinators was perceived to be helpful by 76% of health professionals. Improvements in how they were told about abnormalities were suggested and these included the need for systems and protocols that ensured that quality information was communicated quickly.
Conclusions: The frequent absence of means of effective communication between primary and secondary care about diagnosed abnormalities, and health professionals' uncertainties about their role has implications for the quality of care given to women who receive positive results after prenatal screening or diagnosis. There is a need for standards to be established concerning the communication of information to the health professionals responsible for the community-based care of pregnant women after a positive test result.