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Table 3 Frequency of symptoms reported during CE interviews (n = 41) when patients were asked to describe what symptoms they experience as a result of lupus

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

Symptom Reported spontaneously, n (%) Reported in response to specific probing, n (%) Total, n (%)a
Fatigue 35 (85) 5 (12) 40 (98)
Joint pain 34 (83) 4 (10) 38 (93)
Rash 19 (46) 17 (41) 36 (88)
Swelling of hand, fingers, feet or legs 16 (39) 17 (41) 33 (80)
Joint stiffness/cramps 21 (51) 12 (29) 33 (80)
Cognitive/focus/memory issues 9 (22) 17 (41) 26 (63)
Headaches 9 (22) 14 (34) 23 (56)
Muscle pain/achiness 15 (37) 0 15 (37)
Fevers/hot flashes 14 (34) 0 14 (34)
Dry/itchy skin 9 (22) 0 9 (22)
Chills 9 (22) 0 9 (22)
Decreased appetite/weight loss 8 (20) 0 8 (20)
Hair loss 8 (20) 0 8 (20)
Raynaud’s 8 (20) 0 8 (20)
Mouth sores 7 (17) 0 7 (17)
Numbness/tingling 7 (17) 0 7 (17)
Weakness/decreased muscle strength 3 (7) 4 (10) 7 (17)
Dry eyes/vision issues 6 (15) 0 6 (15)
Nausea/vomiting 6 (15) 0 6 (15)
Shortness of breath 6 (15) 0 6 (15)
Coughing/wheezing 4 (10) 0 4 (10)
High blood pressure 3 (7) 1 (2) 4 (10)
Muscle stiffness/cramps 4 (10) 0 4 (10)
Rapid heart rate 4 (10) 0 4 (10)
Weight gain 0 4 (10) 4 (10)
Dizziness 3 (7) 0 3 (7)
Bladder issues 2 (5) 0 2 (5)
Insomnia 2 (5) 0 2 (5)
Night sweats 2 (5) 0 2 (5)
Nose bleeds 2 (5) 0 2 (5)
Tremors/twitching 2 (5) 0 2 (5)
Bone pain 1 (2) 0 1 (2)
Dry mouth 1 (2) 0 1 (2)
Panic attacks 1 (2) 0 1 (2)
Seizures 1 (2) 0 1 (2)
  1. aTotal % may be higher due to rounding
  2. CE concept elicitation
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