Background
These are questions about other effects that breathing or respiratory problems may have. If you do not have a particular problem then please tick 'Not applicable'. |
Definitely agree
|
Agree somewhat
|
Disagree somewhat
|
Definitely disagree
|
N/A
|
Factor loading
|
---|---|---|---|---|---|---|
My coughing or breathing is embarrassing in public |
37.3% (25/67) |
37.3% (25/67) |
13.4% (9/67) |
11.9% (8/67) | N = 4 |
.530
|
My breathing problem is a nuisance to my family, friends, or neighbours |
15.6% (10/64) |
17.2% (11/64) |
18.8% (12/64) |
48.4% (31/64) | N = 7 |
.478
|
I have sometimes felt I had to hide from other people the fact that I had PCD |
25.4% (17/67) |
19.4% (13/67) |
10.4% (7/67) |
44.8% (30/67) | N = 4 |
.880
|
I have sometimes felt embarrassed in public because of having PCD |
21.2% (14/66) |
28.8% (19/66) |
12.1% (8/66) |
37.9% (25/66) | N = 5 |
.818
|
I have sometimes avoided situations where people might find out that I had PCD |
23.1% (15/65) |
13.8% (9/65) |
6.2% (4/65) |
56.9% (37/65) | N = 6 |
.863
|
I have sometimes felt worried about other people's reaction to PCD |
21.2% (14/66) |
24.2% (16/66) |
13.6% (9/66) |
40.9% (27/66) | N = 5 |
.866
|
How does
PCD
affect your daily life?
|
True
|
False
|
N/A
|
Factor loading
| ||
I sometimes feel it makes people reject me |
18.8% (13/69) |
81.2% (56/69) | N = 2 |
.586
| ||
Sometimes it makes it more difficult for me to make friends |
16.2% (11/68) |
83.8% (57/68) | N = 3 |
.592
| ||
It is sometimes difficult telling people about my condition |
43.5% (30/69) |
56.5% (39/69) | N = 2 |
.860
| ||
Sometimes I prefer not to let other people know that I have PCD |
59.4% (41/69) |
40.6% (28/69) | N = 2 |
.710
| ||
Sometimes it is difficult having a rare and unusual condition |
56.5% (39/69) |
43.5% (30/69) | N = 2 |
.622
|
Methods
Sampling and recruitment
Participant code | Sex | Age at interview | Age at diagnosis |
Situs inversus
| Stigma score based on questionnaire in 2003 (higher scores indicate higher stigma) | Stigma rating of interviewer in 2005. 1 indicates low perceived stigma and 4 indicates high perceived stigma. |
---|---|---|---|---|---|---|
1A
|
F
|
54
|
32
|
Yes
|
-.46
|
1
|
1B
|
F
|
57
|
23
|
Yes
|
1.61
|
4
|
2A
|
F
|
65
|
58
|
Yes
|
-.37
|
2
|
2B
|
F
|
61
|
50
|
Yes
|
2.05
|
3
|
3A
|
F
|
49
|
34
|
Yes
|
-.08
|
1
|
3B
|
F
|
42
|
22
|
Yes
|
1.91
|
4
|
4B
|
F
|
53
|
43
|
No
|
-.18
|
1
|
4A
|
F
|
51
|
36
|
No
|
1.51
|
4
|
5A
|
F
|
27
|
11
|
No
|
-.87
|
1
|
5B
|
F
|
32
|
10
|
No
|
1.16
|
3
|
7B
|
M
|
42
|
35
|
No
|
-.73
|
1
|
7A
|
M
|
65
|
56
|
No
|
2.05
|
4
|
St George's Respiratory Questionnaire | SF-36 component scores | ||||
---|---|---|---|---|---|
Participant | Symptoms | Activity | Impact | Physical | Mental |
1A
|
54
|
72
|
63
|
47
|
56
|
1B
|
39
|
88
|
69
|
38
|
33
|
2A
|
11
|
88
|
73
|
19
|
52
|
2B
|
32
|
50
|
43
|
26
|
32
|
3A
|
64
|
81
|
77
|
46
|
45
|
3B
|
29
|
81
|
74
|
57
|
28
|
4B
|
11
|
38
|
57
|
32
|
58
|
4A
|
7
|
34
|
42
|
18
|
35
|
5A
|
79
|
59
|
95
|
56
|
41
|
5B
|
39
|
78
|
70
|
42
|
31
|
7B
|
39
|
69
|
98
|
60
|
28
|
7A
|
7
|
78
|
61
|
27
|
47
|
High stigma: mean (SD)
|
42.9 (28.0)
|
67.7 (17.8)
|
77.0 (16.4)
|
43.1 (15.3)
|
46.5 (11.2)
|
Low stigma: mean (SD)
|
25.6 (14.9)
|
68.2 (21.0)
|
59.9 (14.3)
|
34.7 (14.0)
|
34.5 (6.8)
|
Paired t-test | t (5) = 1.83 | t (5) = -.047 | t (5) = 2.53 | t (5) = 1.30 | t (5) = 1.84 |
p = .126 | p = .964 | p = .053 | p = .249 | p = .125 |