Psychological impact of population-based carrier testing for cystic fibrosis: 3-year follow-up. UK Cystic Fibrosis Follow-Up Study Group.
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.


RESULTS
746 (62%) of 1201 questionnaires were returned. Recall of the meaning of test results was accurate in 225 (80%) of 280 carriers but only 200 (43%) of 466 screen-negative individuals. 46 (16%) of 280 proven carriers believed that their result meant that they were only likely, rather than definitely, to be a carrier; 232 (50%) 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% 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 no disadvantages to their own health. There were no differences between carriers and screen-negative individuals in reproductive intentions or behaviour.


CONCLUSIONS
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.
Axworthy
D
D
Psychology and Genetics Research Group, UMDS, London, UK.
Brock
D J
DJ
Bobrow
M
M
Marteau
T M
TM
D000328:Adult; D001007:Anxiety / Q000209:etiology; D001294:Attitude to Health; D016022:Case-Control Studies; D003071:Cognition; D032882:Comprehension; D003550:Cystic Fibrosis / Q000235:genetics / Q000517:prevention & control* / Q000523:psychology*; D005260:Female; D005500:Follow-Up Studies; D006580:Genetic Carrier Screening; D005817:Genetic Counseling; D005820:Genetic Testing / Q000379:methods / Q000523:psychology*; D006262:Health; D006801:Humans; D008297:Male; D008568:Memory; D011795:Surveys and Questionnaires; D013997:Time Factors