Knowledge, adjustment, and preparedness of probands to cope with future problems and decisions related to their genetic condition: comparison of probands from the centre operating a genetic register service (Manchester) with those from the other two genetic centres
| Manchester | Liverpool/ Sheffield | p value | |
|---|---|---|---|
| Knowledge | |||
| Correct risk for self (n=191) | 65 (80%) | 83 (75%) | 0.43 |
| Correct risk for children (n=187) | 61 (77%) | 91 (84%) | 0.22 |
| Identified prenatal test (n=192) | 36 (44%) | 57 (52%) | 0.28 |
| Lerman worry score: | |||
| Mean (SE) (n=129) | 5.8 (0.44) | 6.7 (0.37) | 0.12 |
| STAI state anxiety score: | |||
| Mean (SW) (n=167) | 36.6 (1.42) | 39.7 (1.20) | 0.10 |
| Would contact genetic centre under specified circumstances: | |||
| Pregnancy (n=169) | 30 (40%) | 28 (30%) | 0.17 |
| Change in symptoms (n=145) | 17 (25%) | 15 (19%) | 0.12 |
| Information (n=192) | 63 (77%) | 69 (63%) | 0.04 |
| Emotional support (n=192) | 24 (29%) | 17 (15%) | 0.02 |
| Feel adequately prepared to make reproductive decisions: | |||
| All probands (n=192) | 75 (91%) | 98 (89%) | 0.59 |
| Those planning more children (n=40) | 16 (89%) | 21 (95%) | 0.92 |
| Those not planning more children (n=128) | 54 (96%) | 72 (100%) | 1.0 |
| Undecided about more children (n=24) | 5.0 (63%) | 5 (31%) | 0.15 |
| Feel confident to cope with problems in any future pregnancy: | |||
| Those planning more children (n=40) | 2.7 | 3.4 | 0.16 |
| Undecided about more children (n=24) | 3.6 | 3.3 | 0.65 |
| Have discussed/feel adequately prepared to discuss condition with children (n=158) | 63 (95%) | 90 (98%) | 0.65 |