Table 4 Results of the survey.
Answer n. (An) (Qn, qn) | Topic of the question | Results | Interpreted within the theme | ||
|---|---|---|---|---|---|
A1 (Q2, q2) | After the invitation, thought about being a carrier of the variant associated with Parkinson’s disease | Yes | 27 | 52.9 | Information filter through personal experience |
No | 21 | 41.2 | |||
Not answered | 3 | 5.9 | |||
A2 (Q3, q2) | Concern about being carrier of the Parkin gene variant | Very concerned | 1 | 2 | |
Concerned to some extent | 11 | 21.6 | |||
A little concerned | 17 | 33.3 | |||
Not at all concerned | 17 | 33.3 | |||
I don’t know | 3 | 5.9 | |||
Not answered | 2 | 3.9 | |||
A3 (Q7, q2) | Perceived likelihood of not carrying the variant | Very likely | 9 | 17.7 | |
Rather likely | 3 | 5.9 | |||
Neither likely nor unlikely | 19 | 37.3 | |||
Rather unlikely | 14 | 27.5 | |||
Very unlikely | 5 | 9.8 | |||
Not answered | 1 | 2 | |||
A4 (Q5a, q2) | Comparative risk perception of developing Parkinson’s disease following invitation (risk perception higher today compared to risk perception before receiving the invitation) | Do not agree | 20 | 39.2 | |
Rather not agree | 6 | 11.8 | |||
Neither agree nor disagree | 17 | 33.3 | |||
Rather agree | 5 | 9.8 | |||
Agree | 2 | 3.9 | |||
Not answered | 1 | 2 | |||
A5 (Q5b, q2) | Comparative assessment of feeling worried about developing Parkinson’s disease following invitation: feeling more worried today compared to before receiving the invitation | Do not agree | 21 | 41.2 | |
Rather not agree | 6 | 11.8 | |||
Neither agree nor disagree | 15 | 29.4 | |||
Rather agree | 7 | 13.7 | |||
Agree | 0 | 0 | |||
Not answered | 2 | 3.9 | |||
A6 (Q4, q2) | Self-assessment of the risk of developing Parkinson’s disease | Very high risk | 1 | 2 | |
Increased risk | 5 | 9.8 | |||
Low risk | 18 | 35.3 | |||
No risk | 5 | 9.8 | |||
I don’t know | 21 | 41.2 | |||
Not answered | 1 | 2 | |||
A7 (Q8, q2) | Familial history of Parkinson’s disease | Yes | 18 | 35.3 | |
No | 31 | 60.8 | |||
Not answered | 2 | 2.9 | |||
A8 (Q1, q1) | Satisfaction with information received before participation | No, many questions were not answered | 2 | 3.9 | Stress relief mechanisms |
No, some questions are still unclear | 3 | 5.9 | |||
Yes, most of the questions were clarified | 22 | 43.1 | |||
Yes, all the questions were answered | 20 | 39.2 | |||
Not answered | 4 | 7.8 | |||
A9 (Q10, q2) | Satisfaction with information received at the study center | No, many questions were not answered | 0 | 0 | |
No, some questions are still unclear | 0 | 0 | |||
Yes, most of the questions were clarified | 14 | 27.5 | |||
Yes, all the questions were answered | 36 | 70.6 | |||
Not answered | 1 | 2 | |||
A10 (Q11, q2) | Clarification of questions and doubts during participation | Yes | 49 | 96.1 | |
No | 1 | 2 | |||
Not answered | 1 | 2 | |||
A11 (Q13b, q2) | Disclosure of the disease under study | Yes | 45 | 88.2 | Targeted information matters |
No | 3 | 5.9 | |||
This is not important to me | 0 | 0 | |||
Not answered | 3 | 5.9 | |||
A12 (Q9, q2) | No return of genetic research results | That’s fine with me | 42 | 82.4 | Expectations on disclosure |
I think that’s a pity | 8 | 15.7 | |||
I don’t care | 0 | 0 | |||
Not answered | 1 | 2 | |||
A13 (Q6, q2) | Willingness to know the individual carrier status relative to Parkin | Yes | 27 | 52.9 | |
No | 23 | 45.1 | |||
Not answered | 1 | 2 | |||
A14 (Q13a, q2) | Evaluation of the practice of not disclosing the disease | Very negative | 8 | 15.7 | |
Rather negative | 17 | 33.3 | |||
Partly negative/partly positive | 16 | 31.4 | |||
Rather positive | 8 | 15.7 | |||
Very positive | 1 | 2 | |||
Not answered | 1 | 2 | |||
A15 (Q13c, q2) | Impact of the type of disease in willingness to know the disease under study | Yes | 27 | 52.9 | |
No | 23 | 45.1 | |||
Not answered | 1 | 2 | |||
