Table 7 Samples of items and response choices modified in the SCPD-S v.01
From: Content validation of a self-report daily diary in patients with sickle cell disease
Tested Item or Response Choice (SCPD-S v0.1) | Rationale for Modification | Patient Quotes (On Tested Item or Response Choice) | Final Modified Item(s) or Response Choice(s) (SCPD-S v1.0) |
|---|---|---|---|
Item How long did the pain crisis episode last in total during the last 24 hours? Select the time point that best represents the total duration (in hours and/or minutes). If the pain crisis episode lasted for more than 24 hours, please report 24 hours and 00 minutes. | Patients reported problems with recording exact times for the duration of their pain crises, therefore, the item was changed to ask for an approximation. | That was more like an approximate amount. Most of the time I don’t really keep track of time. (001) | Approximately how many hours did the pain crisis last during the past 24 hours? |
Response Choice How long did the pain crisis episode last in total during the last 24 hours? Select the time point that best represents the total duration (in hours and/or minutes). If the pain crisis episode lasted for more than 24 hours, please report 24 hours and 00 minutes. □□ Hours Minutes | Eleven out of 12 patients expressed a preference for only recording hours rather than both hours and minutes. | This is kind of lengthy. (002) [Interviewer: If we did it that way, is it necessary to have the minutes at all or should we just say the number of hours if it’s less than a day?] I would say hours. (002) | Item response choice: □□ Hours |
Item During the last 24 hours, did you take any medication to control your pain? | When probed, multiple patients reported not including over-the-counter medications or medications prescribed while in the hospital when answering the question. | I think it was asking about the medication…which, in my head, was the medication that I gave myself. (003) | Did you take any medication to control your pain, including prescribed and over-the-counter medication, during the past 24 hours? |
Item How much fatigue did you experience due to your sickle cell pain crisis during the last 24 hours? | Ten out of 12 patients endorsed and understood this item. Two adolescent interviewees did not understand what was meant by fatigue, so definitions and descriptors were added for clarity. | I didn’t really understand the word fatigued, but you told me. (013) | How much fatigue did you experience due to your sickle cell pain crisis during the past 24 hours (for example, tiredness, very low energy, having trouble keeping your eyes open, or frequent napping)? |