Table 1.
Questionnaire of studies 1 and 2
| Letter A | Letter B | |||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Patient | General pop. | Total | Patient | General pop. | Total | |||||||||
| N (75) | % | N (73) | % | N (148) | % | N (75) | % | N (80) | % | N (155) | % | |||
| Characteristics of participants | Sex | Female | 46 | 61.3 | 42 | 57.5 | 88 | 59.5 | 48 | 64.0 | 52 | 65.0 | 100 | 64.5 |
| Male | 29 | 38.7 | 31 | 42.5 | 60 | 40.5 | 27 | 36.0 | 28 | 35.0 | 55 | 35.5 | ||
| Age (median) | 35 | 37 | 35.5 | 41 | 40 | 40 | ||||||||
| Had at least one child | 51 | 68.0 | 46 | 63.0 | 97 | 65.5 | 49 | 65.3 | 48 | 60.0 | 97 | 62.6 | ||
| Worked in the health care sector | 13 | 17.3 | 26 | 35.6 | 39 | 26.4 | 12 | 16.0 | 20 | 25.0 | 32 | 20.6 | ||
| Understanding | 1. How many times did you read this letter? | |||||||||||||
| One time | 58 | 77.3 | 66 | 90.4 | 124 | 83.8 | 54 | 72.0 | 82 | 77.5 | 116 | 74.8 | ||
| Two times | 17 | 22.7 | 7 | 9.6 | 24 | 16.2 | 19 | 25.3 | 17 | 21.3 | 36 | 23.1 | ||
| Three times or more | 0 | 0.0 | 0 | 0.0 | 0 | 0.0 | 2 | 2.7 | 1 | 1.3 | 3 | 1.9 | ||
| 2. What is your level of understanding of this letter? | ||||||||||||||
| 0. Nothing is understood | 0 | 0.0 | 0 | 0.0 | 0 | 0.0 | 1 | 1.3 | 1 | 1.3 | 2 | 1.3 | ||
| 1 | 0 | 0.0 | 0 | 0.0 | 0 | 0.0 | 0 | 0.0 | 0 | 0.0 | 0 | 0.0 | ||
| 2 | 3 | 4.0 | 7 | 9.6 | 10 | 6.8 | 0 | 0.0 | 0 | 0.0 | 0 | 0.0 | ||
| 3 | 13 | 17.3 | 1 | 1.4 | 14 | 9.5 | 3 | 4.0 | 4 | 5.0 | 7 | 4.5 | ||
| 4 | 9 | 12.0 | 19 | 26.0 | 28 | 18.9 | 16 | 21.3 | 11 | 13.8 | 27 | 17.4 | ||
| 5. All are understood | 50 | 66.7 | 46 | 63.0 | 96 | 64.9 | 55 | 73.3 | 64 | 80.0 | 119 | 76.8 | ||
| 3. Are there paragraphs which you had difficulty understanding? | ||||||||||||||
| a. No | 51 | 68.0 | 57 | 78.1 | 108 | 73.0 | 66 | 88.0 | 71 | 88.8 | 137 | 88.4 | ||
| b. Yes | 24 | 32.0 | 16 | 21.9 | 40 | 27.0 | 9 | 12.0 | 9 | 11.3 | 18 | 11.6 | ||
| 4. What do you mainly learn through this letter? | ||||||||||||||
| a. Nothing | 1 | 1.3 | 0 | 0.0 | 1 | 0.7 | 2 | 2.7 | 0 | 0.0 | 2 | 1.3 | ||
| b. I am a carrier of a genetic anomaly | 2 | 2.7 | 1 | 1.4 | 3 | 2.0 | 5 | 6.7 | 0 | 0.0 | 5 | 3.2 | ||
| c. A member of my family is a carrier of a genetic anomaly | 31 | 41.3 | 33 | 45.2 | 64 | 43.2 | 28 | 37.5 | 29 | 36.3 | 57 | 36.8 | ||
| d: I could be a genetic disease carrier | 25 | 33.3 | 23 | 31.5 | 48 | 32.4 | 27 | 36.0 | 37 | 46.3 | 64 | 41.3 | ||
| e. A consultation with a geneticist is offered to me | 16 | 21.3 | 15 | 20.5 | 31 | 20.9 | 13 | 17.3 | 13 | 16.3 | 26 | 16.8 | ||
| f. It is an unsolicited letter | 0 | 0.0 | 1 | 1.4 | 1 | 0.7 | 0 | 0.0 | 1 | 1.3 | 1 | 0.6 | ||
| 5. Do you think that all paragraphs are useful? | ||||||||||||||
| a. Yes | 63 | 84.0 | 54 | 74.0 | 117 | 79.1 | 70 | 93.3 | 74 | 94.9 | 144 | 94.1 | ||
| b. No | 12 | 16.0 | 19 | 26.0 | 31 | 20.9 | 5 | 6.7 | 4 | 5.1 | 9 | 5.9 | ||
| Feelings | 6. The reading of this letter may arouse different feelings. What is the feeling that best applies to you? | |||||||||||||
| a. Happy | 0 | 0.0 | 1 | 1.4 | 1 | 7.0 | 0 | 0.0 | 0 | 0.0 | 0 | 0.0 | ||
| b. Serene | 2 | 2.7 | 8 | 11.0 | 10 | 68.0 | 4 | 5.3 | 2 | 2.5 | 6 | 3.9 | ||
| c. Curious | 15 | 20.0 | 15 | 20.5 | 30 | 20.3 | 20 | 26.7 | 15 | 18.8 | 35 | 22.6 | ||
| d. Emotionless | 5 | 6.7 | 0 | 0.0 | 5 | 34.0 | 0 | 0.0 | 4 | 5.0 | 4 | 2.6 | ||
| e. Shocked | 4 | 5.3 | 5 | 6.8 | 9 | 6.1 | 3 | 4.0 | 3 | 3.8 | 6 | 3.9 | ||
| f. Worried | 45 | 60.0 | 35 | 47.9 | 80 | 54.1 | 41 | 24.7 | 44 | 55.0 | 85 | 54.8 | ||
| g. Very worried | 3 | 4.0 | 9 | 12.3 | 12 | 8.1 | 6 | 8.0 | 12 | 15.0 | 18 | 11.6 | ||
| h. Angry | 1 | 1.3 | 0 | 0.0 | 1 | 0.7 | 1 | 1.3 | 0 | 0.0 | 1 | 0.6 | ||
| 7. If you feel worried, is it ….? (multiple answers can be selected) | N = 48 | N = 44 | N = 92 | N = 47 | N = 56 | N = 103 | ||||||||
| a. For yourself | 22 | 45.8 | 28 | 63.6 | 50 | 54.3 | 29 | 61.7 | 44 | 78.6 | 73 | 78.9 | ||
| b. For your child | 32 | 34.8 | 45 | 43.7 | ||||||||||
| c. For your husband/wife | 2 | 4.2 | 1 | 2.3 | 3 | 3.3 | 5 | 10.6 | 3 | 5.4 | 8 | 7.8 | ||
| d. For the affected family member | 22 | 45.8 | 16 | 36.4 | 38 | 41.3 | 27 | 57.4 | 27 | 48.2 | 54 | 52.4 | ||
| 8. If you feel angry, is it …? | ||||||||||||||
| a. In general | 0 | 0 | 0 | 1 | 0 | 1 | ||||||||
| b. Against affected family member | 1 | 0 | 1 | 0 | 0 | 0 | ||||||||
| c. Against the physician who sent the letter | 0 | 0 | 0 | 0 | 0 | 0 | ||||||||
| 9. What do you think about the term “genetic anomaly”? | ||||||||||||||
| a. It is appropriate | 39 | 52.0 | 31 | 42.5 | 70 | 47.3 | 34 | 45.3 | 36 | 45.0 | 70 | 45.2 | ||
| b. It is too frightening | 1 | 1.3 | 3 | 4.1 | 4 | 2.7 | 2 | 2.7 | 8 | 10.0 | 10 | 6.5 | ||
| c. It is frightening but necessary | 24 | 32.0 | 31 | 42.5 | 55 | 37.2 | 30 | 40.0 | 26 | 32.5 | 56 | 36.1 | ||
| d. It is reassuring | 1 | 1.3 | 1 | 4.1 | 2 | 1.4 | 0 | 0.0 | 2 | 2.5 | 2 | 1.3 | ||
| e. Other | 10 | 13.3 | 7 | 9.6 | 17 | 11.5 | 9 | 12.0 | 8 | 10.0 | 17 | 11.0 | ||
| 10. What do you think of the sentence “Some members may wish to discuss this and others will prefer to remain silent”? | ||||||||||||||
| a. It is appropriate | 46 | 61.3 | 32 | 43.8 | 78 | 52.7 | ||||||||
| b. It is comforting | 4 | 5.3 | 5 | 6.8 | 9 | 6.1 | ||||||||
| c. It is unnecessary | 19 | 25.3 | 27 | 37.0 | 46 | 31.1 | ||||||||
| d. Other | 6 | 8.0 | 9 | 12.3 | 15 | 10.1 | ||||||||
| Intention to contact HCP | 11. Will you contact a health care professional? | |||||||||||||
| a. Yes | 69 | 92.0 | 71 | 97.0 | 140 | 94.6 | 67 | 89.3 | 67 | 83.8 | 134 | 86.5 | ||
| b. No | 3 | 4.0 | 2 | 2.7 | 5 | 3.4 | 2 | 2.7 | 2 | 2.5 | 4 | 2.6 | ||
| c. Do not know yet | 3 | 4.0 | 0 | 0.0 | 3 | 2.0 | 6 | 8.0 | 11 | 13.8 | 17 | 11.0 | ||
| 12. If yes, would you contact …? | ||||||||||||||
| a. Your general practitioner | 22 | 29.3 | 9 | 12.3 | 31 | 20.9 | 7 | 9.3 | 13 | 16.3 | 20 | 12.9 | ||
| b. A genetics department | 30 | 40.0 | 44 | 60.3 | 74 | 50.0 | 25 | 33.3 | 34 | 42.5 | 59 | 38.1 | ||
| c. Your general practitioner and genetics department | 17 | 22.6 | 16 | 21.9 | 33 | 22.3 | 34 | 45.3 | 18 | 22.5 | 52 | 33.5 | ||
| d. Another health professional | 0 | 0.0 | 2 | 2.7 | 2 | 1.4 | 1 | 1.3 | 2 | 2.5 | 3 | 1.9 | ||