LupusPRO tool development followed the FDA guidelines for Patient Reported Outcome (PRO) tool development.
This tool was developed in USA, from feedback obtained from both men and women with lupus, of diverse racial/ethnic background. Our patients felt that some of their concerns were not being captured in the other lupus survey tools eg LupusQoL, and hence the need to undertake developing and testing of this tool.
It measures comprehensively 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: Lupus symtoms/flare, Lupus medicines, Cognition, Procreation, Physical and Emotional Health, Pain, Vitality, Sleep, Body Image.
Non HRQOL: Effect on Desires-Goals, Planning, Coping, Social Support, Satisfaction with Care.
It takes 7-8 minutes to complete. It is available in multiple languages.
It changes over time as your lupus changes, hence can be used to track changes in your disease. It can help patients to also 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 to screen their lupus patients for significant concerns which they may not be able to assess fully due to personal or time constraints.