A validated quality of life instrument for people with lupus

Lupus Foundation of America

Resource Content

What is the topic? 

Health-related quality of life (HRQOL) is important to measure when new treatments are studied for lupus. There are a number of questionnaires that have been found to be helpful in determining how people with lupus are feeling and functioning in daily life. However, most of them were not developed specifically for lupus, considering the unique features of lupus in people’s lives. 

The LupusQoL was developed specifically for people with lupus. The LupusQoL instrument is a modified version of the LupusQoL for patients from the United States and has been found to work for people from different cultures.

What did the researchers hope to learn?

The researchers tested the LupusQoL-US instrument to see how well it could pick up different active clinical features of lupus from the point of view of the patient’s experience. 

Who was studied? 

People with lupus were recruited to participate in the study from Rush University Medical Center and John H. Stroger Hospital in Chicago. 

How was the study conducted?

People with lupus filled out the LupusQoL-US questionnaire, which includes the following eight areas, or domains, of life that may be affected by lupus: Physical Health, Pain, Planning, Intimate Relationships, Burden to others, Emotional health, Body image, and Fatigue. Scores range from 0 to 100, with 100 being the best HRQOL. 

Lupus disease activity was assessed using the Safety of Estrogens in Lupus Erythematosus National Assessment-Systemic Lupus Erythematosus Disease Activity Index (SELENA-SLEDAI). Flares were also recorded as either mild to moderate or severe. Organ damage was assessed using the Systemic Lupus International Collaborating Clinics/ACR Damage Index (SLICC-ACR SDI). 

What did the researchers find? 

185 people with lupus participated in the study. The participants had an average age of 42 and had lupus for an average of nine years. They were mostly African American women, although Caucasians, Hispanics, and Asians were also included. Of the eight domains included in the LupusQoL-US, Fatigue and Physical Health were the most affected, followed by Pain, Planning, and Burden to others. 

In general, the older the participants, the more they reported being negatively affected by physical health and pain. None of the eight domains were significantly influenced by how long lupus had been present. 

Several differences were found based on gender. Women had significantly lower scores (or worse quality of life) than men for the following features: Physical Health, Intimate Relationships, Emotional health, and Fatigue. 

Some differences were also found based on marital status. Scores for Physical Health and Planning were better for those who were married while Intimate Relationships were better for those who were not married. 

Disease activity (SLEDAI scores) was related to all of the scores except for those measuring Intimate Relationships and Body image. Alopecia (loss of hair) seemed to affect quality of life in all of the domains. 

Neuropsychiatric damage was also significantly related to scores for all of the domains except Intimate Relationships and Body image. 

What were the limitations of the study? 

This was an assessment of patients at one point in time. It will be very useful to see how sensitive this measurement tool will be to measure individuals getting better or worse over time, particularly during treatment studies. 

What do the results mean for you?

The LupusQoL-US instrument measures how lupus affects quality of life. This report suggests that lupus has a significant impact on a range of features that contribute to a person’s quality of life. However, other variables may be having an impact on quality of life in people with lupus, including age, sex, and marital status.

LupusQoL-US benchmarks for US patients with systemic lupus erythematosus.  
Authors: Jolly M, Pickard SA, Mikolaitis RA, Rodby RA, Sequeira W, and Block JA. (2010). 
Journal of Rheumatology 37: 1828-33.