Table 1.

Patient-reported outcome measures reviewed

Instrument	Number of items	Recall period	Response format	Reference or rationale for inclusion of PRO if not cited in the literature search
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.