Table 2 Results of statistical analysis on test-retest reliability of the FPQ questions
From: Self-administered version of the Fabry-associated pain questionnaire for adult patients
saFPQ question | AC1-statistic (95 % confidence interval) | Scale | Statistics |
|---|---|---|---|
1) Do you have permanent pain in adulthood or did you have permanent pain in childhood? | Adulthood: 0.901 (0.766–1) | Nominal | AC1 |
Childhood: 0.834 (0.697–0.971) | |||
2) Do you have pain attacks in adulthood or did you have pain attacks in childhood? | Adulthood: 0.939 (0.855–1) | Nominal | AC1 |
Childhood: 0.875 (0.757–0.993) | |||
2a) If you have pain attacks in adulthood or if you had pain attacks in childhood: how often did/how often do these pain attacks occur and for how long did/how long do these pain attacks last? | No statistics | ||
3) Do you have pain crises in adulthood or did you have pain crises in childhood? | Adulthood: 0.714 (0.520–0.908) | Nominal | AC1 |
Childhood: 0.801 (0.652–0.950) | |||
3a) If you have pain crisis in adulthood or if you had pain crisis in childhood: how frequent were/are these pain crises and how long did/do they last in average? | No statistics | ||
4a) Do you have in adulthood or did you have in childhood pain that can be triggered by touch? | Adulthood: 0.593 (0.356–0.830) | Nominal | AC1 |
Childhood: 0.580 (0.390–0.770) | |||
4b) Do you have in adulthood or did you have in childhood pain that can be triggered by a cold object? | Adulthood: 0.730 (0.559–0.901) | Nominal | AC1 |
Childhood: 0.688 (0.506–0.870) | |||
4c) Do you have in adulthood or did you have in childhood pain that can be triggered by a warm object? | Adulthood: 0.800 (0.651–0.949) | Nominal | AC1 |
Childhood: 0.663 (0.479–0.847) | |||
4d) Do you have in adulthood or did you have in childhood pain that can be triggered by pressure? | Adulthood: 0.817 (0.645–0.989) | Nominal | AC1 |
Childhood: 0.767 (0.608–0.926) | |||
5) Do you have in adulthood or did you have in childhood sensory impairment like numbness or tingling in the painful body area? | Adulthood: 0.742 (0.579–0.905) | Nominal | AC1 |
Childhood: 0.688 (0.517–0.859) | |||
6) What is your pain intensity at the moment?a | 0.970 (0.945–0.984) | Interval | ICC |
7) How did your pain develop over time (with or without treatment)? | Frequency: 0.400 (0.103–0.632) | Interval | ICC |
7a) Since last visit in Würzburg | Intensity: 0.173 (−0.145–0.459) | ||
7) How did your pain develop over time (with or without treatment)? | Frequency: 0.123 (−0.299–0.508) | Interval | ICC |
7b) Under enzyme replacement therapy | Intensity: 0.577 (0.222–0.798) | ||
7) How did your pain develop over time (with or without treatment)? | Frequency: 0.902 (0.819–0.948) | Interval | ICC |
7c) During life | Intensity: 0.764 (0.592–0.869) | ||
8) Please indicate the body areas that are mainly affected when you have pain. | Hands: 0.939 (0.857–1) | Nominal | AC1 |
Feet: 0.906 (0.802–1) | |||
Back/neck: 0.836 (0.701–0.971) | |||
Knees: 1 (−) | |||
Shoulders: 0.892 (0.772–1) | |||
Other joints: 0.897 (0.783–1) | |||
Abdomen/thorax: 0.859 (0.726–0.992) | |||
Head/jaws: 0.878 (0.743–1) | |||
Arms/legs: 0.804 (0.641–0.967) | |||
9) Which analgesic drugs do you take? | No statistics | ||
10) When was the last time you had pain? | No statistics | ||
10a) What type of pain was your last pain? | 0.889 (0.671–1) | Nominal | AC1 |
10b) The last time you had pain: what was its maximum intensity on a scale from zero to ten? | 0.875 (0.630–1) | Nominal | AC1 |
10c) The last time you had pain: what was its average intensity on a scale from zero to ten? | 0.620 (0.236–1) | Nominal | AC1 |
11) How does your pain feel? | Adulthood burning: 0.902 (0.794–1) | Nominal | AC1 |
Childhood burning: 0.846 (0.701–0.991) | |||
Adulthood stabbing: 0.754 (0.550–0.958) | |||
Childhood stabbing: 0.800 (0.612–0.988) | |||
Adulthood pulling: 0.853 (0.714–0.992) | |||
Childhood pulling: 0.902 (0.420–0.867) | |||
Adulthood like electric shocks: 0.644 (0.420–0.867) | |||
Childhood like electric shocks: 0.840 (0.689–0.991) | |||
Adulthood tearing: 0.915 (0.821–1) | |||
Childhood tearing: 0.919 (0.831–1) | |||
Adulthood don’t know: 1 (−) | |||
Childhood don’t know: 0.945 (0.871–1) | |||
12) Are there triggers for your pain? | Adulthood without trigger: 0.751 (0.545–0.957) | Nominal | AC1 |
Childhood without trigger: 0.873 (0.734–1) | |||
Adulthood heat: 0.917 (0.803–1) | |||
Childhood heat: 0.951 (0.855–1) | |||
Adulthood cold: 0.901 (0.766–1) | |||
Childhood cold: 0.864 (0.715–1) | |||
Adulthood fever: 1 (−) | |||
Childhood fever: 1 (−) | |||
Adulthood physical activity: 0.877 (0.742–1) | |||
Childhood physical activity: 0.95 (0.854–1) | |||
Adulthood sports: 1 (−) | |||
Childhood sports: 1 (−) | |||
Adulthood don’t know: 1 (−) | |||
Childhood don’t know: 1 (−) | |||
13) How many days without work (including housework) did you have in the last year due to pain? | 0.967 (0.902–1) | Nominal | AC1 |
14) How much does pain influence your working ability (including housework) in general on a scale from zero to ten? | 0.693 (0.491–0.825) | Interval | ICC |
15) How much does pain influence your leisure activities in general on a scale from zero to ten? | 0.680 (0.472–0.816) | Interval | ICC |