Patient experience in systemic lupus erythematosus: development of novel patient-reported symptom and patient-reported impact measures

Mathias, S. D.; Berry, P.; De Vries, J.; Pascoe, K.; Colwell, H. H.; Chang, D. J.; Askanase, A. D.

doi:10.1186/s41687-018-0028-7

Journal of Patient-Reported Outcomes

Table 4 Sample questions from the SSD and SIQ

From: Patient experience in systemic lupus erythematosus: development of novel patient-reported symptom and patient-reported impact measures

Sample questions from the SSD: People with lupus may experience a variety of symptoms. Please indicate how severe the following lupus symptoms were at their worst in the past 24 hours by selecting one number.
Rate the severity of feeling tired OR lacking energy at its worst in the past 24 h?	0 Absent/Did not have	1	2	3	4	5	6	7	8	9	10 Worst imaginable
Rate the severity of joint pain at its worst in the past 24 h?	0 Absent/Did not have	1	2	3	4	5	6	7	8	9	10 Worst imaginable
Rate the severity of swelling of joints including fingers, hands, elbows, feet or ankles at its worst in the past 24 h?	0 Absent/Did not have	1	2	3	4	5	6	7	8	9	10 Worst imaginable
Rate the severity of rash at its worst in the past 24 h?	0 Absent/Did not have	1	2	3	4	5	6	7	8	9	10 Worst imaginable
Sample questions from the SIQ: In the past 7 days, how much did lupus impact your ability to make plans in advance? (select one response)
Not at all	A little bit			Somewhat			Quite a bit		Very much
In the past 7 days, how much did lupus impact your ability to participate in leisure activities or hobbies that require you to leave your house (such as going to a park, going shopping, going to a restaurant, or going to the movies)? (select one response)
Not at all	A little bit			Somewhat			Quite a bit		Very much
In the past 7 days, how much did lupus impact your ability to get together with friends? (select one response)
Not at all	A little bit			Somewhat			Quite a bit		Very much
In the past 7 days, how much did lupus impact your ability to walk a short distance (approximately one block)? (select one response)
Not at all	A little bit			Somewhat			Quite a bit		Very much
In the past 7 days, how much did lupus impact your ability to feel rested enough to get out of bed in the morning? (select one response)
Not at all	A little bit			Somewhat			Quite a bit		Very much

SIQ SLE Impact Questionnaire, SSD SLE Symptom Severity DiaryThe actual questionnaire uses some bolding and underlining

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