Patient-reported outcome measures for multidimensional assessment of pain impact in patients with SCD: health-related quality-of-life measures
| Measure . | Pain domain . | Example questions . |
|---|---|---|
| ASCQ-ME14 (ages ≥18 y) | “Pain impact” | In past 7 d: “How often did you have pain so bad that you could not do anything?”; “How often did you have pain so bad that you could not get out of bed?”; “How often did you have severe pain?”; “How often did you have pain so bad that you had to stop what you were doing?”; “How often did you have pain so bad that it was hard to finish what you were doing?” |
| PedsQL SCD Module15,16 (ages 2-18 y) | “About my pain impact” | In past 1 mo: “It is hard for me to do things because I might get pain”; “I miss school when I have pain”; “It is hard for me to run when I have pain”; “It is hard for me to have fun when I have pain”; “I have trouble moving when I have pain”; “It is hard for me to do what others can do because I might get pain” |
| “About my pain management and control” | In past 1 mo: “It is hard for me to manage my pain”; “It is hard for me to control my pain” | |
| PROMIS/ HealthMeasures17 (all ages) | “Pain interference” | In past 7 d “I had trouble sleeping when I had pain”; “It was hard for me to pay attention when I had pain”; “It was hard for me to run when I had pain”; “It was hard for me to walk one block when I had pain” |
| “Pain behavior” | Asks whether the following occurred when in pain: “It showed on my face”; “I talked about my pain”; “I asked for medicine”; “I moved slower”; “I had to stop what I was doing”; “I lay down” | |
| “Pain quality-affective” | Asks whether pain made patient feel: “miserable, awful, horrible, unbearable, worrying, unending, annoying, unpleasant” |
| Measure . | Pain domain . | Example questions . |
|---|---|---|
| ASCQ-ME14 (ages ≥18 y) | “Pain impact” | In past 7 d: “How often did you have pain so bad that you could not do anything?”; “How often did you have pain so bad that you could not get out of bed?”; “How often did you have severe pain?”; “How often did you have pain so bad that you had to stop what you were doing?”; “How often did you have pain so bad that it was hard to finish what you were doing?” |
| PedsQL SCD Module15,16 (ages 2-18 y) | “About my pain impact” | In past 1 mo: “It is hard for me to do things because I might get pain”; “I miss school when I have pain”; “It is hard for me to run when I have pain”; “It is hard for me to have fun when I have pain”; “I have trouble moving when I have pain”; “It is hard for me to do what others can do because I might get pain” |
| “About my pain management and control” | In past 1 mo: “It is hard for me to manage my pain”; “It is hard for me to control my pain” | |
| PROMIS/ HealthMeasures17 (all ages) | “Pain interference” | In past 7 d “I had trouble sleeping when I had pain”; “It was hard for me to pay attention when I had pain”; “It was hard for me to run when I had pain”; “It was hard for me to walk one block when I had pain” |
| “Pain behavior” | Asks whether the following occurred when in pain: “It showed on my face”; “I talked about my pain”; “I asked for medicine”; “I moved slower”; “I had to stop what I was doing”; “I lay down” | |
| “Pain quality-affective” | Asks whether pain made patient feel: “miserable, awful, horrible, unbearable, worrying, unending, annoying, unpleasant” |