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Summary: Background The objective of this study was to show the long-term psychological effects of population-based screening for cystic fibrosis.

Methods The sample comprised all carriers (n=435) and, for each carrier, two matched screen-negative individuals (n=870) detected during screening programmes for cystic fibrosis in the general population and in antenatal populations carried out a median of 3 years earlier in six UK centres. Questionnaires were sent to all eligible participants, with reminders sent to non-responders. The main endpoints were understanding of test results, degree of anxiety, perceptions of health, and reproductive intentions, and behaviour.

Findings 746 (62 percent) of 1201 questionnaires were returned.Recall of the meaning of test results was accurate in 225 (80 percent) of 280 carriers but only 200 (43 percent) of 466 screen-negative individuals. 46 (16 percent) of 280 proven carriers believed that their result meant that they were only likely, rather than definitely, to be a carrier; 232 (50 percent) of 466 of those with a screen-negative result erroneously believed that the result meant that they were definitely not carriers. There was no significant difference between carriers and screen-negative individuals in degree of general anxiety, although 16 percent of carriers reported feeling worried about their test results. Carriers had a poorer perception of their current health than did non-carriers, even though they had been told that carrier status confers to disadvantages to their own health. There were no differences between carriers and screen-negative individuals in reproductive intentions or behaviour.

Interpretation We have shown that in the long-term, retention of the meaning of test results from cystic fibrosis screening is poor. Further research is needed to improve the performance of test-related counselling programmes to ensure that the main objectives of these programmes, to provide information on carrier status and to allow informed reproductive decisions, are met.

Lancet 1996; 347: 1443-46

See Commentary page 1421

Copyright. (C) The Lancet Ltd, 1996.