LupusPRO is a patient-reported outcome survey tool developed from and for lupus patients, to help follow the impact of lupus or its treatment on their quality of life.

LupusPRO tool development followed the FDA guidelines for patient-reported outcome (PRO) tool development. This tool was developed in the United States. Feedback came from both men and women with lupus and from people of diverse racial and ethnic backgrounds. We undertook the development and testing of this tool because our patients felt that some of their concerns were not being captured in the other lupus survey tools, such as LupusQoL.

What the Survey Measures

LupusPRO comprehensively measures a variety of concerns relevant to lupus patients, and the impact of lupus and its treatment on their health-related quality of life (HRQOL), as well as non-health-related quality of life (non-HRQOL).

It measures the following HRQOL factors:

• Lupus symptoms/flares
• Effects of lupus medicines
• Cognition
• Procreation
• Physical and emotional health
• Pain
• Vitality
• Sleep
• Body image

It measures the following non-HRQOL factors:

• Effects on desires and goals
• Planning
• Coping
• Social support
• Satisfaction with care

It includes 43 questions, written in gender-neutral language, and takes 7 to 8 minutes to complete. It is available in multiple languages.

Changes in Survey Results

Your survey results will change over time as your lupus changes, hence it can be used to track changes in your disease. It can also help patients communicate some concerns that they may not be able to communicate with their physicians due to personal, memory or time constraints reasons. Similarly, it can help physicians screen their lupus patients for significant concerns that they may not be able to assess fully due to personal or time constraints.

Survey Versions

Download version 1.7. Version 1.8 is also available.LupusPRO version 1.8 has been tested and shows good psychometric properties. The combined domain of Pain-Vitality from version 1.7 has been split to form three separate domains of Pain, Vitality and Sleep, to make it possible to track changes in these areas over time. The results of version 1.8 testing were presented at the American College of Rheumatology Conference in 2015.