Table 1 Patient-reported outcome measures reviewed

Systemic Lupus Activity Questionnaire (SLAQ) [47]

28

Last 3 months

First 27 items have 4-point scale, ranging from ‘none’ to ‘severe’. Last item has a 1–10 numerical rating scale (NRS)

[47]–[49]

LupusQoL [50]

34

Last 4 weeks

5-point scale ranging from ‘never’ to ‘all of the time’

[30],[51]

LupusPRO [52]

43

Last 4 weeks

5-point scale ranging from ‘never’ to ‘all of the time’

[52],[53]

L-QoL [40]

25

At the moment

Dichotomous ‘true’/’not true’ scale

[30],[40],[54]

SLEQOL [55]

40

Last week

All 7 point Likert scales, although scales have different labels (i.e. ‘not difficult at all’ to ‘very difficult’; ‘not at all’ to ‘extremely troubled’; ‘not at all’ to ‘extremely often’)

[30],[54]

Short Form 36 version 2 (SF-36v2) [56]

36

Standard 4-week recall or Acute 1-week recall version.

Varies dependent on scale [Yes/No and 3, 5 and 6-point Likert scales].

[30],[47],[49],[54],[57]–[63]

Euroqol 5 Domain (EQ-5D) (3-Level and 5-Level) [64],[65]

6

Recall of ‘today’ for both 3L and 5 L version.

3-point scale on 3L and 5-point scale on 5 L version, ranging from absence to inability to perform activity or extreme severity of symptom

Previously used in patients with SLE, and normative data exist for comparison. EQ-5D is a measure used to derive utilities

Functional Assessment of Chronic Illness Therapy-Fatigue Scale (FACIT-Fatigue) [66]

13

Past 7 days

5-point scale ranging from ‘not at all’ to ‘very much’.

[54]

Multidimensional Fatigue Inventory (MFI) [67]

20

Lately

5-level agreement scale from ‘Yes, that is true’ to ‘No, that is not true’.

[35]

Multidimensional Assessment of Fatigue (MAF) [68]

16

Past week

1-10 numerical rating scale (‘not at all’ – ‘a great deal) for items 1–14. Multiple-choice response for items 15 and 16.

[35]

McGill Pain Questionnaire (MPQ) [69]

20

Present pain

Mixed, ranging from 2-point to 6-point scales

[70]

Brief Pain Inventory – Short Form (BPI-SF) [71]

15

Last 24 hours

Most items have an 11 point numerical rating scale, ranging from 0 = no pain and 10 = pain. One item has a binary yes/no response and another ask patients to shade a diagram to show where they have pain. One item has a 0%-100% scale increasing in 10% increments.

Pain is a key symptom of SLE and the BPI-SF has previously been used in a SLE population

Beck Depression Inventory (BDI) [72]

21

Not specified

4-point scale with detailed wording provided for each response.

Depression is a key concept in SLE. The BDI has been used previously with patients with SLE, and normative data exist for comparison

Hospital Anxiety and Depression Scale (HADS) [73]

14

Past week

4-point scale

Depression is a key concept in SLE. The HADS has been used previously with patients with SLE and normative data exist for comparison

Work Productivity and Activity Impairment Questionnaire: Lupus (WPAI:Lupus) [74]

6

Past 7 days

Yes/No & NRS

Absenteeism and presenteeism is a major burden for patients with SLE. The WPAI:Lupus has been used previously in patients with SLE and normative data exist for comparison.