LupusPRO (Lupus Patient Reported Outcome Tool) v1.7

Authors: Meenakshi Jolly and Simon Pickard

For information on, or permission to use the tool, please contact:

Meenakshi Jolly, MD

Assistant Professor of Medicine

Rheumatology, Department of Medicine

Rush University Medical Center

1611 W Harrison Street, Suite 510

Chicago, Il 60612

Phone: 312.563.2800

Fax: 312.563.2075

Meenakshi_Jolly@rush.edu

Copyright: Rush University and University of Illinois at Chicago

Conditions of use:

With Author’s written Permission

Free for academic/non- profit research, with the signature of an agreement

With fees for commercial/pharmaceutical companies, with the signature of an agreement:

For rates, contact Matthew Raymond at 312.563.2780 or matthew_j_raymond@rush.edu

LupusPRO is a disease targeted patient reported outcome tool for patients with systemic lupus

erythematosus (SLE). It was developed from ethnically diverse US patients with SLE (1-3). It has been

validated for use in the US. It has 43 items of which 30 items are for health related quality of life.

It has two constructs Health Related Quality of Life and Non-health related quality of life.

The HRQOL domains include

Lupus Symptoms

Lupus Medications

Cognition, Procreation

Physical health

Emotional Health

Pain & Vitality

Body Image

N-HRQOL domains include

Desires & Goals

Coping

Social Support

Satisfaction with medical Care

Time to completion: 7-10 minutes

Translations: Available in Spanish and French

LupusPRO™ (v 1.7)

This questionnaire asks for your views about the effect of lupus or its treatment on your health, quality of life, and the medical care you receive related to your lupus. Answer each question by placing a cross mark (x) in the response box that best describes you. If you are unsure about how to answer a question, please answer as best you can. There is no right or wrong answer. Please select only one response to each question. You may choose the “Not Applicable” option for a question only if a box is provided in that column for that particular question.

A. In the past 4 weeks, how often did you experience the following due to your lupus?

None of the time

A little of the time

Some of the time

Most of the time

All of the time

Not Applicable

1. Loss of hair □ □ □ □ □ 2. New or flare of previous lupus-related

skin rashes □ □ □ □ □ 3. Lupus flare □ □ □ □ □ 4. Poor memory □ □ □ □ □ 5. Lack of concentration □ □ □ □ □ 6. Lupus medication(s) related bothersome

side effects. □ □ □ □ □ □ 7. Concern about the number of

medications being received for lupus. □ □ □ □ □ □ 8. Concern that lupus medication(s) will

affect ability to have a baby. □ □ □ □ □ □ 9. Worry about ability to prevent unplanned

pregnancy. □ □ □ □ □ □ B. How often were you limited in performing the following daily activities because of your physical health due to your lupus over the past 4 weeks?

None of the time

A little of the time

Some of the time

Most of the time

All of the time

Not Applicable

10. Taking care of your personal needs (dress, comb hair, toilet, eat, bathe) □ □ □ □ □

11. Getting in and out of a bed or chair □ □ □ □ □ 12. Fulfilling family responsibilities □ □ □ □ □ □ 13. Taking care of those who directly

depend on me (family, pet). □ □ □ □ □ □

C. How often did you feel the following due to your lupus during the past 4 weeks?

None of the time

A little of the time

Some of the time

Most of the time

All of the time

Not Applicable

14. I felt I was a burden to family or friends due to my inability to perform daily activities.

□ □ □ □ □ □

15. I woke up feeling worn out □ □ □ □ □ 16. I felt pain and aching in my body □ □ □ □ □ 17. I was unable to do my usual activities

due to bodily pain □ □ □ □ □ 18. I was unable to perform usual activities

for long periods of time (e.g. around home or at work) because of pain or fatigue

□ □ □ □ □

19. I was limited in the kinds of tasks or activities I could perform because of pain or fatigue

□ □ □ □ □

D. During the past 4 weeks, how often did you feel because of your lupus that you were:

None of the time

A little of the time

Some of the time

Most of the time

All of the time

Not Applicable

20. Worried about lupus’ impact on my future □ □ □ □ □

21. Worried about losing income □ □ □ □ □ □ 22. Anxious □ □ □ □ □ 23. Depressed □ □ □ □ □ 24. Concerned that lupus (or its treatment)

may lead to more health problems □ □ □ □ □ 25. Concerned that lupus related health

problems will last a long time □ □ □ □ □

E. During the past 4 weeks, how often did you feel the following due to lupus?

None of the time

A little of the time

Some of the time

Most of the time

All of the time

Not Applicable

26. I disliked my appearance □ □ □ □ □ 27. I thought less of myself □ □ □ □ □ 28. I lacked control over my appearance □ □ □ □ □ 29. I was self conscious about my

appearance □ □ □ □ □ 30. I was embarrassed about how others

perceived me □ □ □ □ □

F. During the past 4 weeks, how often did lupus interfere with your:

None of the time

A little of the time

Some of the time

Most of the time

All of the time

Not Applicable

31. Ability to plan activities and schedule events □ □ □ □ □

32. Overall life satisfaction □ □ □ □ □ 33. Enjoyment of life □ □ □ □ □ 34. Fulfillment of career goals □ □ □ □ □ □ G. During the past 4 weeks, how often would you say in regards to your lupus?

H. During the past 3 months, how often did you feel the following about the medical care for lupus you received?

None of the time

A little of the time

Some of the time

Most of the time

All of the time

Not Applicable

40. My doctor was accessible when I had a question regarding my lupus. □ □ □ □ □ □

41. My doctor understood the impact of lupus on my life. □ □ □ □ □ □

42. My doctor provided me with the information I need to understand my lupus.

□ □ □ □ □ □

43. My doctor discussed/ monitored the side effects of lupus medicine/s. □ □ □ □ □ □

Thank you for completing this questionnaire. Please check to make sure all questions have been answered. ©™ 2007, Rush University Medical Center and Board of Trustees of the University of Illinois at Chicago. All rights reserved.031610

None of the time

A little of the time

Some of the time

Most of the time

All of the time

Not Applicable

35. I received support from my friends. □ □ □ □ □ □ 36. I received support from my family. □ □ □ □ □ □ 37. I focused on making my situation better. □ □ □ □ □ 38. I learned to live with my lupus. □ □ □ □ □ 39. I received comfort/strength from my

religious or spiritual beliefs. □ □ □ □ □ □

Table 1: Summary Scores and Reliability of LupusPRO domains

Domain Mean (SD, Range)

Internal Consistency

Reliability

Test Retest Reliability

Lupus Symptoms 74.1 (24.1, 0-100) 0.72 0.79

Cognition 73.1 (27.8, 0-100) 0.92 0.77

Lupus Medication 77.9 (27.2, 0-100) 0.68 0.74

Physical Health 78.1 (22.9, 0-100) 0.85 0.78

Pain-Vitality 60.4 (28.4, 0-100) 0.92 0.84

Emotional Health 60.4 (28.6, 0-100) 0.92 0.87

Procreation 90.9 (21.3, 0-100) 0.72 0.57

Body Image 72.8 (29.0,0-100) 0.94 0.92

General Health 68.6 (24.9, 0-100) NA 0.91

Desires/Goals 68.1 (29.2,0-100) 0.91 0.63

Coping 69.7 (27.2,0-100) 0.76 0.77

Social support 70.6 (30.9, 0-100) 0.81 0.65

Satisfaction with care

76.5 (30.2,0-100) 0.92 0.55

Table 2. Validity of the LupusPRO against SF36, disease activity and disease damage.

*n=68 for BILAG

Domain SF36 (r, p value)

n=236 Disease Activity

(r, p value) n=184* Disease Damage (r, p value) n=68

Lupus Symptoms

PGA (-0.37, 0.001) SLEDAI ( -0.23, 0.002) LFA (-0.44, 0.001) General BILAG (-0.31,0.01), Muco-cutaneous BILAG (-0.47,0.001) Musculo-skeletal BILAG (-0.13,0.29) Total BILAG (-0.43,0.001)

Cognition LFA (-0.19, 0.04) -0.23, 0.06

Lupus Medication SLEDAI (-0.17,0.02) LFA (-0.15, 0.08)

-0.37, 0.001

Physical Health PF (0.62, 0.001) RP (0.57, 0.001)

PGA (-0.14, 0.05) LFA (-0.25, 0.004) Total BILAG (-0.23,0.05)

Pain-Vitality BP (0.75, 0.001) VT (0.74,0.001)

PGA (-0.14, 0.06) LFA (-0.21, 0.02) Musculo-skeletal BILAG (-0.26,0.03) Total BILAG (-0.27,0.02)

Emotional Health MH (0.64,0.001) RE (0.52, 0.001)

PGA (-0.19, 0.01) SLEDAI (-0.14, 0.05) LFA (-0.20, 0.02) Muco-cutaneous BILAG (-0.25,0.04) Musculo-skeletal BILAG (-0.21,0.09) Vasculitis BILAG (-0.31, 0.01) Total BILAG (-0.34,0.01)

Procreation PGA (-0.20, 0.007) SLEDAI (-0.18, 0.01)

-0.24,0.05

Body Image

PGA (-0.20, 0.005) SLEDAI (-0.16, 0.03) LFA (-0.23, 0.01) Muco-cutaneous BILAG (-0.25, 0.04) Vasculitis BILAG (-0.26,0.04) Total BILAG (-0.24,0.05)

-0.28,0.03

General Health GH (0.58, 0.001) LFA (-0.21, 0.03) Musculo-skeletal BILAG (-0.26,0.03) Vasculitis BILAG (-0.24, 0.04)

Desires/Goals

PGA (-0.18, 0.01) SLEDAI (-0.22, 0.003) LFA (-0.18, 0.04) General BILAG (-0.30,0.01) Muco-cutaneous BILAG (-0.33, 0.01) Musculo-skeletal BILAG (-0.35,0.001) Total BILAG (-0.50,0.001)

Coping Vasculitis BILAG (-0.25, 0.04)

Social support SS (0.20, 0.002) Vasculitis BILAG (-0.23, 0.06) -0.26, 0.04

Satisfaction with care PGA (0.18, 0.01) Musculo-skeletal BILAG (-0.23,0.06) Cardio-Pulmonary BILAG (-0.35, 0.001)

HRQOL PCS (0.54, 0.001) MCS (0.64, 0.001) SF6D (0.68, 0.001)

PGA (-0.30, 0.001) SLEDAI (-0.32, 0.001) LFA (-0.29, 0.002) Muco-cutaneous BILAG (-0.23, 0.06) Musculo-skeletal BILAG (-0.22,0.08) Vasculitis BILAG (-0.21, 0.09)

-0.32,0.01

Non-HRQOL PCS (0.30, 0.001) MCS (0.27, 0.001) SF6D (0.36, 0.001)

Vasculitis BILAG (-0.28, 0.02)

Table 3. Criterion validity of LupusPRO

PGA mean (SD) (n=182) LFA Flare mean (SD) (n=128)

Lupus Symptoms

0 84.3 (19.4) >0-1 69.6 (23.6) >1 62.1 (28.2) (p=0.001)

Yes 80.5 (21.6) No 51.6 (26.6) (p=0.001)

Cognition 0 76.7 (25.5) >0-1 75.7 (27.9) >1 66.7 (31.4) (p=0.18)

Yes 72.5 (27.6) No 59.3 (27.3) (p=0.03)

Lupus Medication

0 80.4 (26.4) >0-1 81.6 (25.8) >1 68.2 (32.8) (p=0.04)

Yes 80.7 (26.4) No 70 (31.8) (p=0. 0.08)

Physical Health 0 85.0 (21.5) >0-1 75.8 (24.2) >1 75.5 (22.7) (p=0.02)

Yes 79.7 (24.6) No 63.8 (22.3) (p=0.003)

Pain-Vitality 0 66.3 (28.9) >0-1 61.2 (27.6) >1 54.8 (31.9) (p=0.14)

Yes 60.4 (29.5) No 45 (24.9) (p=0. 01)

Emotional Health

0 69.0 (28.6) >0-1 61.4 (29.8) >1 51.1 (31.7) (p=0.01)

Yes 65.4 (29.5) No 50.0 (31.3) (p=0. 02)

Procreation 0 93.1 (18.1) >0-1 89.3 (24.8) >1 79.8 (30.5) (p=0.02)

Yes 93.8 (19.5) No 90.0 (27.9) (p=0.42)

Body Image 0 82.9 (23.4) >0-1 74.7 (28.9) >1 66.9 (32.7) (p=0.01)

Yes 79.2 (26.3) No 63.2 (30.5) (p=0. 009)

General Health 0 77.5 (18.8) >0-1 76.7 (21.4) >1 63.0 (28.5) (p=0.07)

Yes 63.4 (30.4) No 49.5 (26.9) (p=0. 03)

Desires/Goals 0 76.9 (27.4) >0-1 70.1 (27.7) >1 58.7 (34.7) (p=0.008)

Yes 73.3 (28.1) No 60.0 (30.1) (p=0. 0.03)

Coping 0 74.9 (27.9) >0-1 70.0 (26.4) >1 73.6 (32.2) (p=0.56)

Yes 73.0 (26.4) No 69.7 (31.3) (p=0. 59)

Social support 0 74.6 (32.5) >0-1 73.9 (29.7) >1 80.3 (31.3) (p=0.58)

Yes 72.5 (32.4) No 67.0 (32.0) (p=0.45)

Satisfaction with care

0 79.7 (29.2) >0-1 78.1 (32.0) >1 92.1 (12.7) (p=0.02)

Yes 76.4 (32.0) No 78.0 (28.7) (p=0.82)

Reference List

(1) Jolly M, Pickard AS, Wilke C, Lin HW, Khandelwal S, Rodby R et al. Development and Validation of a US Lupus Specific Patient Reported Outcome Measure. Arthritis & Rheum. 56[9s], S113. 2007.

(2) Jolly M, Pickard AS, Fogg L, Wilke C, Lin H, Mikolaitis R et al. US Patient Derived Lupus-Specific Patient Reported Outcome Measure (Lupus-PRO©): Validity and Reliability. Arthritis & Rheumatism 2008; 58(9s):S805.

(3) Cervera J, Cooray D, Jolly M, Katsaros EP, Moldovan I, Shinada S et al. Predictors of Patient Reported Health Outcomes in A New Lupus Cohort in Southern California. Arthritis & Rheum 60[10s], S515. 2010.

Scoring for LupusPRO v1.7

The LupusPRO© has 5 point Likert response format, where 0=None of the time/not applicable, 1= A little of the time, 2= Some of the time, 3=Most of the time, 4= All of the time, 5= Not applicable (recode as 0 for scoring). Reverse scoring for some items is required (as above). There are 12 observed domains. Item scores are totaled for each domain item and the mean domain score is obtained by dividing the total score by the number of items in that domain. The mean raw domain score is transformed to scores ranging from 0 (worst QOL) to 100 (best QOL) by dividing by 4 (the number of Likert responses {5 responses} minus 1) and then multiplying by 100, as below: (Mean raw domain score/4) x 100= Transformed score for the domain. Transformed domain scores are obtainable when at least 50% of the items are answered. Total HRQOL and N-HRQOL scores are obtained by averaging the transformed domain scores within each construct.

Items Construct Domain Description Reverse Coding

1-3 HRQOL Lupus Symptoms Lupus Symptoms Yes

4-5 HRQOL Cognition Cognition Yes

6-7 HRQOL Lupus Medications Lupus Medications Yes

8-9 HRQOL Procreation Procreation Yes

10-14 HRQOL Physical Health Physical Function, Role Physical Yes

15-19 HRQOL Pain Vitality Pain Vitality Yes

20-25 HRQOL Emotional Health Emotional function, Role Emotional Yes

26-30 HRQOL Body Image Body Image Yes

31-34 N-HRQOL Desires-Goals Desires, Goals, Plans Yes

35-36 N-HRQOL Social support Support system No

37-39 N-HRQOL Coping Coping No

40-43 N-HRQOL Satisfaction with care Satisfaction with Lupus Care No

Table 1: Summary Scores and Reliability of LupusPRO domains

Domain Mean (SD, Range)

Internal Consistency

Reliability

Test Retest Reliability

Lupus Symptoms 74.1 (24.1, 0-100) 0.72 0.79

Cognition 73.1 (27.8, 0-100) 0.92 0.77

Lupus Medication 77.9 (27.2, 0-100) 0.68 0.74

Physical Health 78.1 (22.9, 0-100) 0.85 0.78

Pain-Vitality 60.4 (28.4, 0-100) 0.92 0.84

Emotional Health 60.4 (28.6, 0-100) 0.92 0.87

Procreation 90.9 (21.3, 0-100) 0.72 0.57

Body Image 72.8 (29.0,0-100) 0.94 0.92

General Health 68.6 (24.9, 0-100) NA 0.91

Desires/Goals 68.1 (29.2,0-100) 0.91 0.63

Coping 69.7 (27.2,0-100) 0.76 0.77

Social support 70.6 (30.9, 0-100) 0.81 0.65

Satisfaction with care

76.5 (30.2,0-100) 0.92 0.55

Table 2. Validity of the LupusPRO against SF36, disease activity and disease damage.

*n=68 for BILAG

Domain SF36 (r, p value)

n=236 Disease Activity

(r, p value) n=184* Disease Damage (r, p value) n=68

Lupus Symptoms

PGA (-0.37, 0.001) SLEDAI ( -0.23, 0.002) LFA (-0.44, 0.001) General BILAG (-0.31,0.01), Muco-cutaneous BILAG (-0.47,0.001) Musculo-skeletal BILAG (-0.13,0.29) Total BILAG (-0.43,0.001)

Cognition LFA (-0.19, 0.04) -0.23, 0.06

Lupus Medication SLEDAI (-0.17,0.02) LFA (-0.15, 0.08)

-0.37, 0.001

Physical Health PF (0.62, 0.001) RP (0.57, 0.001)

PGA (-0.14, 0.05) LFA (-0.25, 0.004) Total BILAG (-0.23,0.05)

Pain-Vitality BP (0.75, 0.001) VT (0.74,0.001)

PGA (-0.14, 0.06) LFA (-0.21, 0.02) Musculo-skeletal BILAG (-0.26,0.03) Total BILAG (-0.27,0.02)

Emotional Health MH (0.64,0.001) RE (0.52, 0.001)

PGA (-0.19, 0.01) SLEDAI (-0.14, 0.05) LFA (-0.20, 0.02) Muco-cutaneous BILAG (-0.25,0.04) Musculo-skeletal BILAG (-0.21,0.09) Vasculitis BILAG (-0.31, 0.01) Total BILAG (-0.34,0.01)

Procreation PGA (-0.20, 0.007) SLEDAI (-0.18, 0.01)

-0.24,0.05

Body Image

PGA (-0.20, 0.005) SLEDAI (-0.16, 0.03) LFA (-0.23, 0.01) Muco-cutaneous BILAG (-0.25, 0.04) Vasculitis BILAG (-0.26,0.04) Total BILAG (-0.24,0.05)

-0.28,0.03

General Health GH (0.58, 0.001) LFA (-0.21, 0.03) Musculo-skeletal BILAG (-0.26,0.03) Vasculitis BILAG (-0.24, 0.04)

Desires/Goals

PGA (-0.18, 0.01) SLEDAI (-0.22, 0.003) LFA (-0.18, 0.04) General BILAG (-0.30,0.01) Muco-cutaneous BILAG (-0.33, 0.01) Musculo-skeletal BILAG (-0.35,0.001) Total BILAG (-0.50,0.001)

Coping Vasculitis BILAG (-0.25, 0.04)

Social support SS (0.20, 0.002) Vasculitis BILAG (-0.23, 0.06) -0.26, 0.04

Satisfaction with care PGA (0.18, 0.01) Musculo-skeletal BILAG (-0.23,0.06) Cardio-Pulmonary BILAG (-0.35, 0.001)

HRQOL PCS (0.54, 0.001) MCS (0.64, 0.001) SF6D (0.68, 0.001)

PGA (-0.30, 0.001) SLEDAI (-0.32, 0.001) LFA (-0.29, 0.002) Muco-cutaneous BILAG (-0.23, 0.06) Musculo-skeletal BILAG (-0.22,0.08) Vasculitis BILAG (-0.21, 0.09)

-0.32,0.01

Non-HRQOL PCS (0.30, 0.001) MCS (0.27, 0.001) SF6D (0.36, 0.001)

Vasculitis BILAG (-0.28, 0.02)

Table 3. Criterion validity of LupusPRO

PGA mean (SD) (n=182) LFA Flare mean (SD) (n=128)

Lupus Symptoms

0 84.3 (19.4) >0-1 69.6 (23.6) >1 62.1 (28.2) (p=0.001)

Yes 80.5 (21.6) No 51.6 (26.6) (p=0.001)

Cognition 0 76.7 (25.5) >0-1 75.7 (27.9) >1 66.7 (31.4) (p=0.18)

Yes 72.5 (27.6) No 59.3 (27.3) (p=0.03)

Lupus Medication

0 80.4 (26.4) >0-1 81.6 (25.8) >1 68.2 (32.8) (p=0.04)

Yes 80.7 (26.4) No 70 (31.8) (p=0. 0.08)

Physical Health 0 85.0 (21.5) >0-1 75.8 (24.2) >1 75.5 (22.7) (p=0.02)

Yes 79.7 (24.6) No 63.8 (22.3) (p=0.003)

Pain-Vitality 0 66.3 (28.9) >0-1 61.2 (27.6) >1 54.8 (31.9) (p=0.14)

Yes 60.4 (29.5) No 45 (24.9) (p=0. 01)

Emotional Health

0 69.0 (28.6) >0-1 61.4 (29.8) >1 51.1 (31.7) (p=0.01)

Yes 65.4 (29.5) No 50.0 (31.3) (p=0. 02)

Procreation 0 93.1 (18.1) >0-1 89.3 (24.8) >1 79.8 (30.5) (p=0.02)

Yes 93.8 (19.5) No 90.0 (27.9) (p=0.42)

Body Image 0 82.9 (23.4) >0-1 74.7 (28.9) >1 66.9 (32.7) (p=0.01)

Yes 79.2 (26.3) No 63.2 (30.5) (p=0. 009)

General Health 0 77.5 (18.8) >0-1 76.7 (21.4) >1 63.0 (28.5) (p=0.07)

Yes 63.4 (30.4) No 49.5 (26.9) (p=0. 03)

Desires/Goals 0 76.9 (27.4) >0-1 70.1 (27.7) >1 58.7 (34.7) (p=0.008)

Yes 73.3 (28.1) No 60.0 (30.1) (p=0. 0.03)

Coping 0 74.9 (27.9) >0-1 70.0 (26.4) >1 73.6 (32.2) (p=0.56)

Yes 73.0 (26.4) No 69.7 (31.3) (p=0. 59)

Social support 0 74.6 (32.5) >0-1 73.9 (29.7) >1 80.3 (31.3) (p=0.58)

Yes 72.5 (32.4) No 67.0 (32.0) (p=0.45)

Satisfaction with care

0 79.7 (29.2) >0-1 78.1 (32.0) >1 92.1 (12.7) (p=0.02)

Yes 76.4 (32.0) No 78.0 (28.7) (p=0.82)

Reference List

(1) Jolly M, Pickard AS, Wilke C, Lin HW, Khandelwal S, Rodby R et al. Development and Validation of a US Lupus Specific Patient Reported Outcome Measure. Arthritis & Rheum. 56[9s], S113. 2007.

(2) Jolly M, Pickard AS, Fogg L, Wilke C, Lin H, Mikolaitis R et al. US Patient Derived Lupus-Specific Patient Reported Outcome Measure (Lupus-PRO©): Validity and Reliability. Arthritis & Rheumatism 2008; 58(9s):S805.

(3) Cervera J, Cooray D, Jolly M, Katsaros EP, Moldovan I, Shinada S et al. Predictors of Patient Reported Health Outcomes in A New Lupus Cohort in Southern California. Arthritis & Rheum 60[10s], S515. 2010.

Scoring for LupusPRO v1.7

The LupusPRO© has 5 point Likert response format, where 0=None of the time/not applicable, 1= A little of the time, 2= Some of the time, 3=Most of the time, 4= All of the time, 5= Not applicable (recode as 0 for scoring). Reverse scoring for some items is required (as above). There are 12 observed domains. Item scores are totaled for each domain item and the mean domain score is obtained by dividing the total score by the number of items in that domain. The mean raw domain score is transformed to scores ranging from 0 (worst QOL) to 100 (best QOL) by dividing by 4 (the number of Likert responses {5 responses} minus 1) and then multiplying by 100, as below: (Mean raw domain score/4) x 100= Transformed score for the domain. Transformed domain scores are obtainable when at least 50% of the items are answered. Total HRQOL and N-HRQOL scores are obtained by averaging the transformed domain scores within each construct.

Items Construct Domain Description Reverse Coding

1-3 HRQOL Lupus Symptoms Lupus Symptoms Yes

4-5 HRQOL Cognition Cognition Yes

6-7 HRQOL Lupus Medications Lupus Medications Yes

8-9 HRQOL Procreation Procreation Yes

10-14 HRQOL Physical Health Physical Function, Role Physical Yes

15-19 HRQOL Pain Vitality Pain Vitality Yes

20-25 HRQOL Emotional Health Emotional function, Role Emotional Yes

26-30 HRQOL Body Image Body Image Yes

31-34 N-HRQOL Desires-Goals Desires, Goals, Plans Yes

35-36 N-HRQOL Social support Support system No

37-39 N-HRQOL Coping Coping No

40-43 N-HRQOL Satisfaction with care Satisfaction with Lupus Care No