Table 1.
Response and inclusion
| Patients' organisation | Consumer panel | |||
|---|---|---|---|---|
| Response | ||||
| questionnaires mailed | 100 | 1500 | ||
| questionnaires filled in (response rate)a | 59 | (59%) | 757 | (51%) |
| Pompe disease (in family) | ||||
| Yes | 59 | 2b | ||
| No | 0 | 750 | ||
| item missing | 0 | 5c | ||
|
Pompe disease (in family) (n = 61) |
neutral group (n = 750) |
|||
| Sufficient knowledge score | ||||
| 58 | 95% | 555 | 74% | |
a Not counting 5 members of the patients' organisation and 117 of the consumer panel who only provided their reason for non-response
b Not verified. One of these responders was later excluded due to insufficient knowledge score.
c Excluded from analysis