Introduction
Methods
Developmental process and content of the decision aid
Usability testing
Participants and recruitment
Procedures
Data analysis
Pilot study
Participants and recruitment
Procedures and instrumentation
No. | Item |
---|---|
Natural conception without genetic testing | |
1 | When opting for natural conception, there is a 50% risk of transmitting the mutation to offspring (T) |
2 | When opting for natural conception, besides standard procedures, there will be no extra examinations performed during pregnancy (T) |
3 | When opting for natural conception, during delivery it is already clear whether your child has the mutation (F) |
Prenatal diagnosis | |
4 | Prenatal diagnosis takes place during pregnancy (T) |
5 | When opting for prenatal diagnosis, you and your partner can naturally conceive (T) |
6 | Results of prenatal diagnosis will always follow within 1 week (F) |
7 | Prenatal diagnosis is possible from 6 weeks of pregnancy upon (F) |
8 | Prenatal diagnosis is possible in most of the medical centers in the Netherlands (T) |
PGD | |
9 | In vitro fertilization (IVF) is necessary to perform PGD (T) |
10 | PGD is possible in every hospital in the Netherlands (F) |
11 | For PGD, cooperation of family members is a prerequisite (T) |
12 | Hormone-use by the woman is necessary for a PGD treatment (T) |
13 | PGD takes place before the woman is pregnant (T) |
14 | A PGD treatment takes at least 6 months (T) |
15 | In the Netherlands, a woman’s maximum age for PGD is 45 (F) |
Data analysis
Compliance with ethical standards
Results
Usability testing
Couples’ characteristics
Usability results couples
No. | Item | N = 15 Mean (SD) |
---|---|---|
1 | I think that I would like to use the DA frequently | 3.07 (1.16) |
2 | I found the DA unnecessarily complex | 0.20 (0.78) |
3 | I thought the DA was easy to use | 3.53 (0.74) |
4 | I think that I would need technical support to be able to use the DA | 0.00 (0.00) |
5 | I found the various functions included in the DA well integrated | 3.47 (0.64) |
6 | I thought there was too much inconsistency in the DA | 0.40 (1.06) |
7 | I would imagine that people would learn to use the DA very quickly | 3.53 (0.52) |
8 | I found the DA very cumbersome to use | 0.07 (0.26) |
9 | I felt very confident using the DA | 3.73 (0.46) |
10 | I needed to learn a lot before I could get going with the DA | 0.13 (0.35) |
Total score | 91.33 (7.61) |
Health care providers’ characteristics
Usability results health care providers
Pilot study
Participants’ characteristics
Sample characteristics (n = 16) | N | % |
---|---|---|
Gender | ||
Male (M) | 8 | 50.0 |
Female (F) | 8 | 50.0 |
Age (years) | ||
Male | 32.4 (SD = 4.6) | |
Female | 29.1 (SD = 4.3) | |
Education | ||
Middle | 7 | 43.8 |
High | 9 | 56.2 |
Carrier status | ||
Male | 2 | 12.5 |
Female | 6 | 87.5 |
Syndrome | ||
Hereditary breast and ovarian cancer | 7 (5F/2M) | 87.5 |
Lynch syndrome | 1 (F) | 12.5 |
Have (had) cancer | ||
Yes | 4 | 25.0 |
No | 12 | 75.0 |
Reproductive history | ||
Children | ||
Yes | 2 | 12.5 |
No | 14 | 87.5 |
Planning to have children | ||
Currently pregnant | 2 | 12.5 |
Planning to have children within 5 years | 14 | 87.5 |
Preferred reproductive option in mind at T0 | ||
Yes | 11 | 68.8 |
No | 5 | 31.2 |
Preliminary effects of decision aid
Questionnaire (N = 16) | Means (SD) | Paired samples t-test | |||||
---|---|---|---|---|---|---|---|
T0 | T1 | T2 | T0–T1 | T0–T2 | |||
T
|
p
|
T
|
p
| ||||
Decisional conflict | |||||||
Total score (0–100) | 27.6 (19.3) | 11.8 (15.3) | 8.3 (6.4) | 5.73 | < 0.001 | 3.37 | 0.010 |
Uncertainty | 43.8 (28.5) | 27.6 (30.4) | 29.2 (27.7) | 3.67 | 0.002 | 2.19 | 0.047 |
Informed | 40.6 (22.5) | 17.7 (18.5) | 11.3 (13.7) | 5.21 | < 0.001 | 5.97 | < 0.001 |
Values clarity | 30.2 (26.2) | 19.3 (21.9) | 11.9 (15.6) | 2.78 | 0.014 | 3.54 | 0.004 |
Support | 24.0 (16.6) | 17.7 (18.0) | 13.7 (14.1) | 1.60 | 0.131 | 2.65 | 0.020 |
Effective decision | 17.6 (15.0) | 8.0 (15.3) | 5.6 (11.5) | 4.54 | < 0.001 | 1.71 | 0.126 |
Knowledge | |||||||
Total score (0–15) | 8.2 (3.5) | 12.4 (3.7) | 12.8 (2.1) | − 7.73 | <0.001 | − 10.05 | < 0.001 |
Natural conception (0–3) | 2.0 (1.0) | 2.3 (0.9) | 2.5 (0.9) | − 1.78 | 0.096 | − 2.45 | 0.028 |
PND (0–5) | 1.8 (1.7) | 3.9 (1.4) | 4.5 (2.0) | − 5.33 | < 0.001 | − 3.96 | < 0.001 |
PGD (0–7) | 4.4 (1.8) | 6.1 (1.9) | 6.4 (0.9) | − 5.65 | < 0.001 | − 3.67 | 0.003 |
Realistic expectations (0–3) | 0.4 (0.5) | 1.9 (1.0) | 1.3 (1.0) | − 6.45 | < 0.001 | − 4.33 | < 0.001 |
Decision self-efficacy (0–100) | 80.4 (16.9) | 81.3 (16.0) | 83.9 (19.6) | − 0.28 | 0.782 | − 0.38 | 0.708 |