Table 3.
Mean answers by adult patients and parents of child patients
| Adults | Parents | ||||||||
|---|---|---|---|---|---|---|---|---|---|
| MAIN-A | Mean | N | Cannot say (N) | MAIN-C | Mean | N | Cannot say (N) | Difference | p value |
| Q1A Attitude towards uncertainty | 2.045 | 66 | – | Q1C Attitude towards uncertainty | 1.806 | 31 | – | 0.239 | 0.1047 |
| Q2A Own QoL | 1.078 | 51 | 16 | Q2C Own QoL | 1.136 | 22 | 9 | − 0.058 | 0.4953 |
| Q3A The QoL of the close ones | 1.102 | 49 | 18 | Q3C The QoL of the close ones | 1.118 | 17 | 14 | − 0.016 | 0.8661 |
| Q4A Importance of test results on inheritable risk factors | 1.048 | 63 | 4 | Q4C Importance of test results on inheritable risk factors | 1.036 | 28 | 3 | 0.012 | 0.7914 |
| Q5A Concern towards the knowledge of genetic risk factors | 1.803 | 61 | 5 | Q5C Concern towards the knowledge of genetic risk factors | 2.111 | 27 | 3 | − 0.308 | 0.0351 |
| Q6A Influence of genetic risk factors on work life and financial decisions | 1.642 | 53 | 14 | Q6C Influence of genetic risk factors on work life and financial decisions | 1.692 | 26 | 5 | − 0.050 | 0.7247 |
| Q7A Treatable secondary findings | 1.000 | 67 | – | ||||||
| Q8A Non-treatable secondary findings | 1.269 | 67 | – | ||||||
| Q9A Attitude towards genetic information as a part of healthcare | 1.323 | 65 | 2 | Q7C Attitude towards genetic information as a part of healthcare | 1.448 | 29 | 1 | − 0.125 | 0.3291 |
| Q10A Genetic privacy and medical use of results | 1.000 | 63 | 4 | Q8C Genetic privacy and medical use of results | 1.000 | 30 | 1 | 0.000 | – |
| Q11A Genetic privacy and other than medical use of results | 1.050 | 60 | 7 | Q9C Genetic privacy and other than medical use of results | 1.080 | 25 | 6 | − 0.030 | 0.6325 |
| Q12A Monetary investments | 1.356 | 45 | 22 | Q10C Monetary investments | 1.250 | 16 | 14 | 0.106 | 0.4342 |
| Q13A Availability of test results | 1.925 | 67 | – | Q11C Availability of test results | 1.742 | 31 | – | 0.183 | 0.0395 |
| Q14A Informing relatives about test results | 1.303 | 66 | – | Q12C Informing relatives about test results | 1.267 | 30 | – | 0.036 | 0.7443 |
| Q15A Possibility of heritable disease | 1.433 | 67 | – | Q13C Possibility of heritable disease | 1.516 | 31 | – | − 0.083 | 0.4510 |
Comparable questions from MAIN-A (adult patient survey) and MAIN-C (parent survey) next to each other. “Mean” refers to the mean score in the corresponding question. “Difference” refers to the difference between the mean scores. “N” is number of respondents. Note that the sum of respondents may not be 68 (adults) or 31 (parents) as there can be either “Cannot say” or truly missing values which are not included in the calculations of mean score
QoL quality of life