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 some of the other lupus survey tools, 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:
It takes 7-8 minutes to complete. It is available and published in multiple languages. Electronic version is available.
It changes over time as your lupus changes, hence can be used by you or by your doctors 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 comprehenively and efficiently screen their lupus patients for significant concerns, which they may not be able to assess fully due to personal or time constraints. By screening, doctors can assess the need for targeted education, work up or for timely referral to other health care experts (eg psychologist, social work) if indicated.