11. Results- Survey Statistics in Total
TOTAL SURVEY NUMBERS
Number of surveys 48
Number of pages 655
Number of questions 1344
(with checklist over 2500 separate questions)
Number of surveys completed 1868
Number doing survey 1 508
PER SURVEY DATA
NO. total title pages questions % completion rate mins to do
1 508 intro 9 25 x x
2A 217 symptoms 26 40 76 5
2B 107 sym prog 11 17 83 3
3A 99 daily act 17 33 81 5
3B 66 daily act 9 12 83 2
4 58 sens tricks 14 24 x long
5 45 eyes 15 22 81 3
6 28 face 10 34 86 3
7 41 jaw,mouth 18 24 81 3
8 67 voc cord 14 41 85 4
9 58 neck 22 32 75 6
10 21 shoulder,arm 8 18 85 3
11A 28 hand,fingers 22 33 78 5
11B 15 hand,fingers 8 13 83 2
12A 17 leg,foot 20 60 81 6
12B 14 trunk 11 54 85 5
13 35 coping 20 53 80 6
14 39 doc,tests 26 69 88 7
15 32 eff,side eff 22 62 83 6
16 29 alternative 9 31 82 3
17A 28 moods 26 73 x long
17B 23 moods 20 74 89 6
18 34 describing 7 26 83 3
19 40 causes 28 85 x long
20A 23 controvers 25 43 x long
20B 18 controvers 16 47 x long
21 24 outlook 12 34 88 4
22 28 identifier 7 13 89 1
23 24 symptoms 18 24 81 3
24 12 sym progres 7 7 80 1
25 8 daily activ 14 22 78 3
26 8 sens tricks 8 12 82 2
27 3 eyes 7 7 80 1
28 5 face,mouth 15 18 82 2
29 5 vocal cords 16 19 82 3
30 6 neck 11 15 82 2
31 3 shoul hand 12 15 84 2
32 3 leg foot 16 16 83 2
33 2 trunk 6 8 81 1
34 5 coping 13 18 82 2
35 6 doc.tests 10 14 83 2
36 4 eff side eff 10 10 80 2
37 4 eff side eff 10 11 78 2
38 5 alternative 7 10 80 2
39 6 moods 9 11 80 2
40 5 describing 6 6 80 1
41 6 causes 6 7 79 1
42 6 outlook 2 2 81 1
PER TOPIC DATA
no total title pages questions %completion rate mins to do
short short survey- all topics general
1 508 introduction 9 25 100% x
max no. respondents 508
total questions 25
likely type of dystonia all
percent of respondents doing survey 508 of 508 or 100%)
symptoms
2A 217 symptoms 26 40 76 5
23 24 symptoms 18 24 81 3
max. no. respondents 217
total questions 64
likely type of dystonia – all
percent of all respondents doing survey 217 or 508 or 42.7%
(It is assumed for all surveys that those who did a topic in the first group were the only ones like to proceed to the second set. That also is an assumption but is likely true)
symptom progression
2B 107 sym prog 11 17 83 3
24 12 sym progres 7 7 80 1
max no. respondents 107
total questions 25
likely type of dystonia all
percent of all respondents doing survey 107 of 508 or 21%
daily activities
3A 99 daily act 17 33 81 5
3B 66 daily act 9 12 83 2
25 8 daily activ 14 22 78 3
max no. respondents 99
total questions 67
likely type of dystonia all
percent of all respondents doing survey 99 or 508 or 19.4%
sensory tricks
4 58 sens tricks 14 24 x long
26 8 sens tricks 8 12 82 2
max no. respondents 58
total questions 36
likely type of dystonia all
percent of all respondents doing survey 58 or 508 or 11.4%
eyes
5 45 eyes 15 22 81 3
27 3 eyes 7 7 80 1
max no. respondents 45
total questions 29
likely type of dystonia – blepharospasm, cervical possibly some others
percent of all respondents doing survey 45 of 508 or 8.8%
challenges to do this survey – eye problems would make it hard to see the survey
face, mouth, jaw, tongue
6 28 face 10 34 86 3
7 41 jaw,mouth 18 24 81 3
28 5 face,mouth 15 18 82 2
max no. respondents 28-41
total questions 42
likely type of dystonia face, mouth, jaw, possibly others
percent of all respondents doing survey 41 of 508 or 8%
vocal cords
8 67 voc cord 14 41 85 4
29 5 vocal cord 16 19 82 3
max no. respondents 67
total questions 60
likely type of dystonia – spasmodic dysphonia
percent of all respondents doing survey 67 of 508 or 13%
neck
9 58 neck 22 32 75 6
30 6 neck 11 15 82 2
max no. respondents 58
total questions 47
likely type of dystonia cervical
percent of all respondents doing survey 58 or 508 or 11.4%
challenges to do this survey- ability to look at computer screen
shoulder, arm ,hand, fingers
10 21 shoulder,arm 8 18 85 3
11A 28 hand,fingers 22 33 78 5
11B 15 hand,fingers 8 13 83 2
31 3 shoul hand 12 15 84 2
max no. respondents 21-28
total questions 79
likely type of dystonia shoulder, arm, hand, finger, possibly others
percent of all respondents doing survey 28 or 580 or 4.8%
challenges to do this survey – use of hand, fingers to tap keys and mouse
leg foot, toes
12A 17 leg,foot 20 60 81 6
32 3 leg foot 16 16 83 2
max no. respondents 17
total questions 76
likely type of dystonia leg, foot, toes, generalized, possibly others
percent of all respondents doing survey 17 of 508 or 3.3%
trunk
12B 14 trunk 11 54 85 5
33 2 trunk 6 8 81 1
max no. respondents 14
total questions 62
likely type of dystonia trunk, generalized
percent of all respondents doing survey 14 of 508 or 2.8%
percent of this type of dystonia in population
challenges to do this survey – sitting, ability to use computer comfotably
coping
13 35 coping 20 53 80 6
34 5 coping 13 18 82 2
max no. respondents 35
total questions 71
likely type of dystonia all
percent of all respondents doing survey 35 of 508 or 6.9%
doctor, tests, treatment
14 39 doc,tests 26 69 88 7
35 6 doc.tests 10 14 83 2
max no. respondents 39
total questions 83
likely type of dystonia all
percent of all respondents doing survey 39 of 508 or 7.7 %
effects, side effects
15 32 eff,side eff 22 62 83 6
36 4 eff side eff 10 10 80 2
37 4 eff side eff 10 11 78 2
max no. respondents 32
total questions 83
likely type of dystonia all
percent of all respondents doing survey 32 of 508 or 6.3%
alternative therapies
16 29 alternative 9 31 82 3
38 5 alternative 7 10 80 2
max no. respondents 29
total questions 41
likely type of dystonia all
percent of all respondents doing survey 29 of 508 or 5.7%
moods
17A 28 moods 26 73 x long
17B 23 moods 20 74 89 6
39 6 moods 9 11 80 2
max no. respondents 28
total questions 158
likely type of dystonia all
percent of all respondents doing survey 28 or 508 or 5.5%
describing dystonia
18 34 describing 7 26 83 3
40 5 describing 6 6 80 1
max no. respondents 34
total questions 32
likely type of dystonia all
percent of all respondents doing survey 34 of 508 or 6.7%
causes
19 40 causes 28 85 x long
41 6 causes 6 7 79 1
max no. respondents 40
total questions 92
likely type of dystonia all
percent of all respondents doing survey 40 of 508 or 7.9%
controversial
20A 23 controvers 25 43 x long
20B 18 controvers 16 47 x long
max no. respondents 23
total questions 90
likely type of dystonia all
percent of all respondents doing survey 23 of 508 or 4.5%
outlook
21 24 outlook 12 34 88 4
42 6 outlook 2 2 81 1
max no. respondents 24
total questions 36
likely type of dystonia all
percent of all respondents doing survey 24 of 508 or 4.7%
identifiers
22 28 identifier 7 13 89 1
max no. respondents 28
total questions 13
likely type of dystonia all
percent of all respondents doing survey 22 of 508 or 4.3%
Lived Experience With Dystonia 