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Table 2 Concepts discussed during CE interviews

From: Development of the Systemic Lupus Erythematosus Steroid Questionnaire (SSQ): a novel patient-reported outcome tool to assess the impact of oral steroid treatment

 

% (n/N) of patients (n = 33)a

Before receiving steroids

 Potential side effects discussed

71 (12/17)

 Had expectations of the side effects

59 (10/17)

Perceived advantages of taking steroids

 It would be effective

31 (5/16)

 Would have more energy

25 (4/16)

 Would have less joint pain

25 (4/16)

Perceived disadvantages of taking steroids

 Weight gain

56 (9/16)

 Potential long-term side effects eg, kidney problems and bone loss

38 (6/16)

After receiving steroids: side effects

 Expectations about side effects did not match experienceb

50 (8/16)

Most commonly reported side effects (reported by ≥10% of patients)

 Weight gain

67 (22/33)

 Swelling/moon face

36 (12/33)

 Mood swings/feelings of rage

21 (7/33)

 Difficulty sleeping

12 (4/33)

Most bothersome side effects

 Weight gain

64 (14/22)

 Sleeplessness

14 (3/22)

After receiving steroids: dosage

 Have received a higher dose than they typically/currently take

85 (22/26)

 Have received a lower dose than they typically/currently take

38 (10/26)

 Stopped or changed dose without consulting physician

30 (8/27)

Satisfaction with steroid treatment

 Overall satisfied with steroids

75 (12/16)

 Would be happy if treatment regimen did not include steroids

67 (12/18)

  1. CE concept elicitation, N number of patients asked
  2. aPatients who answered questions regarding their steroid experience; where n does not equal 33, data were missing/concepts were not discussed
  3. bMost patients reported side effects were worse than expected