Table 3.
Patient Reported Descriptive Data
| Variable | |
|---|---|
| Current Pain VNS, mean (SD) | 2.8 (2.9) |
| Current Stiffness VNS, mean (SD) | 2.5 (2.8) |
| Current Fatigue VNS, mean (SD) | 4.0 (3.0) |
| HADS Anxiety, mean (SD) | 7.6 (4.4) |
| HADS Anxiety Classifications, n (%) | |
| Non-cases (score of 0 to 7) | 90 (54%) |
| Possible cases (score of 8 to 10) | 35 (21%) |
| Probable cases (score of 11 to 21) | 43 (25%) |
| HADS Depression, mean (SD) | 7.1 (4.06) |
| HADS Depression Classifications, n (%) | |
| Non-cases (score of 0 to 7) | 97 (59%) |
| Possible cases (score of 8 to 10) | 46 (28%) |
| Probable cases (score of 11 to 21) | 21 (13%) |
| SF-36 Physical Component Summary, mean (SD)a | 37.26 (10.93) |
| SF-36 Mental Component Summary, mean (SD)a | 44.02 (12.16) |
| ASCQ-Me: In the past 12 months, how many sickle cell pain attacks (crises) did you have? n (%) | |
| I did not have a pain attack | 20 (11.6) |
| 0 | 11 (6.4) |
| 1 | 20 (11.6) |
| 2 | 22 (12.7) |
| 3 | 21 (12.1) |
| 4 or more | 79 (45.7) |
| ASCQ-Me: When was your last pain attack?, n (%) | |
| I’ve never had a pain episode | 6 (3.5) |
| I have one right now | 6 (3.5) |
| Less than a week ago | 22 (12.7) |
| 1–4 weeks ago | 9 (5.2) |
| 1–6 months ago | 33 (19.1) |
| 7–11 months ago | 45 (26.0) |
| 1–5 years ago | 26 (15.0) |
| More than 5 years ago | 26 (15.0) |
| ASCQ-Me Patient rating of pain severity in last attack (0 to 10), mean (SD) | 7.17 (0.17) |
| ASCQ-Me: How much did your last pain attack (crisis) interfere with your life? n (%) | |
| I’ve never had a pain attack (crisis) | 3 (2) |
| Not at all, I did everything I usually do | 17 (10) |
| I had to cut down on some things I usually do | 44 (25) |
| I could not do most things I usually do | 41 (24) |
| I could not take care of myself and needed some help from family or friends | 40 (23) |
| I could not take care of myself and needed constant care from family, friends, doctors, or nurses | 28 (16) |
| ASCQ-Me: About how long did your most recent pain attack (crisis) last? | |
| I’ve never had a pain attack (crisis) | 4 (2) |
| Less than 1 hour | 8 (5) |
| 1–12 hours | 25 (15) |
| 13–23 hours | 7 (4) |
| 1–3 days | 47 (27) |
| 4–6 days | 38 (22) |
| 1–2 weeks | 28 (16) |
| More than 2 weeks | 16 (9) |
| ASCQ-Me Pain Item Bank (7 day recall), mean (SD) | |
| How often did you have pain so bad that you could not do anything for a whole day? | 3.27 (1.18) |
| How often did you have pain so bad that you could not get out of bed? | 3.49 (1.20) |
| How often did you have very severe pain? | 3.32 (1.17) |
| How often did you have pain so bad that you had to stop what you were doing? | 3.18 (1.19) |
| How often did you have pain so bad that it was hard to finish what you were doing? | 3.21 (1.18) |
| ASCQ-Me Sleep Item Bank (7 day recall), mean (SD) | |
| How often did you stay up most of the night because you could not fall asleep? | 3.00 (1.89) |
| How often was it very easy for you to fall asleep?a | 2.79 (1.13) |
| How often did you have a lot of trouble falling asleep? | 3.06 (1.21) |
| How often did you stay up all night because you could not fall asleep? | 3.39 (1.17) |
| How often did you stay up half the night because you could not fall asleep? | 3.16 (1.11) |
| ASCQ-Me Stiffness Item Bank (7 day recall), mean (SD) | |
| How often were your joints very stiff when you woke up? | 3.11 (1.29) |
| How often were your joints very stiff during the day? | 3.29 (1.21) |
| How often were your joints so stiff during the day that you could not move? | 3.88 (1.03) |
| How often did you wake up so stiff that you could not move? | 3.89 (1.17) |
| How often did it take you a very long time to get out of bed because of stiffness? | 3.69 (1.20) |
| ASCQ-Me Emotional Distress Item Bank (7 day recall), mean (SD) | |
| How often did you feel completely hopeless because of your health? | 3.27 (1.39) |
| How lonely did you feel because of your health problems? | 3.31 (1.38) |
| How depressed were you about your health problems? | 3.40 (1.40) |
| How much do you worry about getting sick? | 2.71 (1.39) |
| How often were you very worried about needing to go to the hospital? | 3.04 (1.42) |
| ASCQ-Me Social Functioning Item Bank (30 day recall), mean (SD) | |
| How much did you rely on others to take care of you because of your health? | 3.24 (1.17) |
| How often did your health slow you down? | 2.65 (1.21) |
| How often did your health make it hard for you to do things? | 2.74 (1.14) |
| How often did your health keep you from going out? | 2.92 (1.16) |
| How much did your health make it hard for you to do things with your friends? | 2.87 (1.20) |
| Standardised Total ASCQ-Me Item Bank, mean (SD) | |
| Pain | 47.20 (10.05) |
| Sleep | 50.04 (7.86) |
| Stiffness | 49.22 (9.67) |
| Emotional Distress | 46.63 (10.39) |
| Social Functioning | 46.44 (10.15) |
aReverse scored