Table 4:
Means, Standard Deviations, and Frequency Distributions of Individual Questions from the CLEQoL (n=101)
| N | Mean | SD | Never(0) | Rarely(25) | Sometimes (50) | Often (75) | All of the time (100) | |
|---|---|---|---|---|---|---|---|---|
| a. Skin Hurts (Sym) | 101 | 37.87 | 32.52 | 30 (29.7) | 21 (20.9) | 28 (27.7) | 12 (11.9) | 10 (9.9) |
| b. Disrupted sleep (Em) | 101 | 33.42 | 35.76 | 45 (44.6) | 12 (11.9) | 20 (19.8) | 13 (12.9) | 11 (10.9) |
| c. Worry about progression (Fxn) | 99 | 52.78 | 34.42 | 17 (16.8) | 15 (14.9) | 29 (28.7) | 16 (15.8) | 22 (21.8) |
| d. Affects work and hobbies (Em) | 100 | 35.00 | 33.71 | 34 (33.7) | 24 (23.8) | 22 (21.8) | 8 (7.9) | 12 (11.9) |
| e. Affects social life (Em) | 100 | 39.75 | 39.26 | 40 (39.6) | 11 (10.9) | 19 (18.8) | 10 (9.9) | 20 (19.8) |
| f. Depressed (Fxn) | 99 | 38.38 | 36.82 | 37 (36.6) | 14 (13.9) | 21 (20.8) | 12 (11.9) | 15 (14.9) |
| g. Skin burns or stings (Sym) | 100 | 42.25 | 35.12 | 30 (29.7) | 14 (13.9) | 27 (26.7) | 15 (14.9) | 14 (13.9) |
| h. Stay at home (Em) | 100 | 36.50 | 38.01 | 43 (42.6) | 12 (11.9) | 16 (15.8) | 14 (13.9) | 15 (14.9) |
| i. Worry about scars (Fxn) | 100 | 58.00 | 37.75 | 19 (18.8) | 14 (13.9) | 14 (13.9) | 22 (21.8) | 31 (30.7) |
| j. Skin itches (Sym) | 100 | 54.50 | 33.41 | 16 (15.8) | 13 (12.9) | 28 (27.7) | 23 (22.8) | 20 (19.8) |
| k. Affects closeness (Em) | 99 | 26.26 | 34.14 | 55 (54.5) | 10 (9.9) | 16 (15.8) | 10 (9.9) | 8 (7.9) |
| l. Ashamed (Fxn) | 100 | 43.00 | 38.61 | 34 (33.7) | 14 (13.9) | 18 (17.8) | 14 (13.9) | 20 (19.8) |
| m. Worry skin worse (Fxn) | 100 | 57.50 | 33.62 | 12 (11.9) | 17 (16.8) | 26 (25.7) | 19 (18.8) | 26 (25.70 |
| n. Do things alone (Em) | 100 | 32.50 | 36.15 | 46 (45.5) | 13 (12.9) | 18 (17.8) | 11 (10.9) | 12 (11.9) |
| o. Angry (Fxn) | 100 | 30.00 | 34.63 | 46 (45.5) | 18 (17.8) | 17 (16.8) | 8 (7.9) | 11 (10.9) |
| p. Water bothers (Sym) | 100 | 18.00 | 29.10 | 66 (65.3) | 11 (10.9) | 12 (11.9) | 7 (6.9) | 4 (4.0) |
| q. Difficult showing affection (Em) | 99 | 22.73 | 31.15 | 57 (56.4) | 11 (10.9) | 21 (20.8) | 3 (3.0) | 7 (6.9) |
| r. Side effects from medicine* | 100 | 53.25 | 35.11 | 19 (18.8) | 12 (11.9) | 29 (28.7) | 17 (16.8) | 23 (22.8) |
| s. Skin irritated (Sym) | 99 | 51.26 | 34.51 | 19 (18.8) | 14 (13.9) | 29 (28.7) | 17 (16.8) | 20 (19.8) |
| t. Interaction with others (Em) | 100 | 29.50 | 34.88 | 50 (49.5) | 11 (10.9) | 20 (19.8) | 9 (8.9) | 10 (9.9) |
| u. Embarrassed (Fxn) | 100 | 43.50 | 39.67 | 36 (35.6) | 10 (9.9) | 21 (20.8) | 10 (9.9) | 23 (22.8) |
| v. Problem for loved ones (Em) | 100 | 13.25 | 23.96 | 70 (69.3) | 14 (13.9) | 12 (11.9) | 1 (1.0) | 3 (3.0) |
| w. Frustration (Fxn) | 100 | 46.25 | 38.66 | 31 (30.7) | 10 (9.9) | 26 (25.7) | 9 (8.9) | 24 (23.8) |
| x. Skin sensitive (Sym) | 99 | 59.60 | 35.66 | 18 (17.8) | 5 (5.0) | 26 (25.7) | 21 (20.8) | 29 (28.7) |
| y. Affects desires for others (Em) | 100 | 27.75 | 35.16 | 55 (54.5) | 7 (6.9) | 20 (19.8) | 8 (7.9) | 10 (9.9) |
| z. Humiliated by skin (Fxn) | 99 | 26.52 | 35.86 | 57 (56.4) | 9 (8.9) | 14 (13.9) | 8 (7.9) | 11 (10.9) |
| aa. Skin bleeds (Sym) | 99 | 19.44 | 27.33 | 56 (55.4) | 22 (21.8) | 11 (10.9) | 7 (6.9) | 3 (3.0) |
| bb. Annoyed (Fxn) | 99 | 46.21 | 36.83 | 29 (28.7) | 8 (7.9) | 31 (30.7) | 11 (10.9) | 20 (19.8) |
| cc. Sex life interference (Em) | 100 | 22.75 | 35.73 | 64 (63.4) | 10 (9.9) | 10 (9.9) | 3 (3.00) | 13 (12.9) |
| dd. Tired (Em) | 100 | 29.00 | 35.13 | 50 (49.5) | 14 (13.9) | 17 (16.8) | 8 (7.9) | 11 (10.9) |
| ee. Worry about flares (Ph) | 99 | 61.62 | 36.30 | 17 (16.8) | 8 (7.9) | 18 (17.8) | 24 (23.8) | 32 (31.7) |
| ff. Worry about hair loss (Bod) | 100 | 58.25 | 40.21 | 23 (22.8) | 12 (11.9) | 10 (9.9) | 19 (18.8) | 36 (35.6) |
| gg. Prevents outdoor activities (Ph) | 100 | 54.50 | 39.15 | 25 (24.8) | 8 (7.9) | 22 (21.8) | 14 (13.9) | 31 (30.7) |
| hh. Worry about what others are thinking (Cos) | 100 | 34.00 | 37.19 | 44 (43.6) | 15 (14.9) | 17 (16.8) | 9 (8.9) | 15 (14.9) |
| ii. Influence clothes (Cos) | 100 | 48.25 | 40.40 | 32 (31.7) | 9 (8.9) | 21 (20.8) | 10 (9.9) | 28 (27.7) |
| jj. Affects grooming practices (Cos) | 99 | 52.27 | 41.20 | 28 (27.7) | 13 (12.9) | 12 (11.9) | 14 (13.9) | 32 (31.7) |
| kk. Affects sun protection efforts (Ph) | 99 | 69.70 | 34.68 | 10 (9.9) | 12 (11.9) | 11 (10.9) | 22 (21.8) | 44 (43.6) |
| Score Total | 98a | 39.06b | 25.11 | |||||
| Cronbach’s Alphac | 0.97 |
*
Item 18 on side effects of treatment is not scored nor included in the final CLEQoL scale.
a
Totals do not equal 101 due to missing responses.
b
The composite score for the overall scale calculation based on 101 responses, possible scale range 0 to 100.
c
Cronbach’s alpha based on 36 items.
Abbreviations: Sym = Symptoms; Em = Emotions; Fxn = Functioning; Cos = Cosmetic effects; Ph = Photosensitivity