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%) 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. 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.
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%) 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. 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.
Entities:
Keywords:
Empirical Approach; Genetics and Reproduction; Health Care and Public Health; UK Cystic Fibrosis Follow-Up Study Group
Authors: Allyn McConkie-Rosell; Gail A Spiridigliozzi; Elizabeth Melvin; Deborah V Dawson; Ave M Lachiewicz Journal: Am J Med Genet C Semin Med Genet Date: 2008-02-15 Impact factor: 3.908
Authors: Francis A M Poppelaars; Herman J Adèr; Martina C Cornel; Lidewij Henneman; Rosella P M G Hermens; Gerrit van der Wal; Leo P ten Kate Journal: J Genet Couns Date: 2004-02 Impact factor: 2.537