Table 1.
Examples of health related quality of life measures used in SLE.
| SLE-specific Measures | # Items | Domains | Scores derived | Item Responses | Score range | Administration | Time to complete |
|---|---|---|---|---|---|---|---|
| Lupus Quality of Life (L-QoL) 46 | 25 | Overall impact of SLE and its treatment on patient | Count of symptoms | Yes/No | 0–25 | Self-completed | <5 minutes |
| SLE Symptom Checklist (SSC) 7 | 38 | Checklist of disease and treatment related physical symptoms | Count of symptoms | Yes/No, followed by 4-point response for Yes responses | 0–38 | Self-completed | <10 minutes |
| SLE Quality of Life (SLEQoL) 30 | 40 | 6 (physical functioning, activities, symptoms, treatment, mood, self-image) | Summary score | 7-point response | 40–280 | Self-completed | Not reported |
| Lupus Quality of Life (LupusQoL)39 | 34 | 8 (physical health, emotional health, body image, pain, planning, fatigue, intimate relationships, and burden to others) | Subscale scores for the 8 domains | 5-point response | Scores are standardized to range 0 to 100 | Self-completed | <10 minutes |
| Generic Instruments | |||||||
| Medical Outcomes Study Short Form (SF- 36) 47 | 36 | 8 (physical function, physical role function, vitality, bodily pain, mental health, emotional role function, social function, general health perceptions) | Subscale scores for the 8 domains. 2 summary scores (Physical and Mental Component Scores) | Mixture of 3, 5 and 6-point response scales. | Scores are standardized to range 0 to 100. | Self-completed to interviewer- administered | 10–15 minutes |
| Quality of Life Scale (QOLs) 48 | 16 | 5 (material and physical well-being, relationships, social/community/civic activities, personal development and fulfillment, recreation) | Total score | 7-point scale | 16–112 | Self-administered or interview- administered | 5 minutes |
| Euopean Quality of Life Scale (EuroQoL) 49 | 5 | 5 (mobility, self-care, usual activities, pain/discomfort, anxiety/depression) and VAS for overall general health | 3 scores: a profile (five- digit descriptor indicating extent of problems in each domain), a population preference- weighted index, and VAS. | 3-level response and a VAS | Profile score: five-digit descriptor (lists scores ranging from 1 to 3 for all five dimensions, e.g. 33333) Index score: −0.11 to 1 |
Self-completed | 2 minutes |
| Sickness Impact Profile (SIP) 50 | 136 | 2 domains, 12 categories (sleep and rest, eating, work, home management, recreation and pastimes, ambulation, mobility, body care and movement, social interaction, alertness behavior, emotional behavior, communication) | 12 category scores, 2 domain scores and a total score | Respondents check items that describe them on a given day; items weighted to reflect the relative severity of each statement. | 0–100 | Self-completed or interviewer administered | 20–30 minutes |
| WHOQoL-Bref 51 | 26 | 4 (physical health, psychological health, social relationships, environment) and overall quality of life and health | 4 domain scores, raw scores can then be transformed to 0–100 scale | 5-level response | 0–100 | Self-completed or interview- administered | 10 minutes |