Table 3.
Reasons in favor of and against ECS.
| Parentsa | Relativesb | Referencec | ||
|---|---|---|---|---|
| n = 58 | n = 101 | n = 781 | ||
| % | % | % | p | |
| A. Reasons in favor of ECS | ||||
| I want to spare my child from a life with a severe hereditary disorder | 50 | 36.6 | 47.2 | 0.111 |
| For my children (when they want to have children) | 37.9 | 38.6 | 14.5 | <0.001 |
| A hereditary disorder occurs in my family | 27.6 | 58.4 | 17.0 | <0.001 |
| I want to prepare myself for a child with one of these disorders | 13.8 | 8.9 | 23.8 | 0.001 |
| I believe I have a great chance of being a carrier | 13.8 | 14.9 | 16.6 | 0.782 |
| B. Reasons against ECS | ||||
| Nobody in the family has one of these disorders | 37.9 | 21.8 | 47.6 | <0.001 |
| Otherd | 31.0 | 42.6 | 10.2 | <0.001 |
| I have taken a carrier test for only the disorder for which I have an increased risk | 8.6 | 17.8 | 4.7 | <0.001 |
| I am afraid of the test results | 8.6 | 10.9 | 15.7 | 0.170 |
| I do not believe I have a great chance of being a carrier | 6.9 | 8.9 | 20.4 | <0.001 |
Questionnaire part IV: the top 5 most frequently selected reasons by parents in favor of and against ECS in order of frequency
Significant differences at p < 0.05 are printed in bold.
aIndividual parents (mothers and fathers) of MPS III patients, both deceased and alive.
bFirst and second degree family members of MPS III patients.
cReproductive-aged people from the general Dutch population [19].
dFor example; I would take the ECS test or I do not want (any more) children.