Lupus questionnaire may be helpful outside of specialty clinics

If you are a person with lupus in the NDB, you may remember a new set of questions we added about a year ago called the Lupus Damage Index Questionnaire (LDIQ). The LDIQ, we hoped, might be a substitute for the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI). Only lupus specialists administer the SDI, but the LDIQ can be administered in community clinics or self-administered by patients. Both are designed to gauge the unfortunate fact of permanent organ damage in many people with lupus. For this study, the LDIQ was giving to people in physicians’ clinics and in the NDB questionnaire. With your answers, we confirmed that the self-administered questionnaire can be nearly as accurate as the SDI in assessing the progression of lupus. Although the people completing the LDIQ in a clinic had better agreement with their doctor’s assessment using the SDI, it’s not clear whether that means the results are actually more accurate that way. The accuracy may be affected by doctor-patient communication and a doctor’s incomplete knowledge of a patient’s lupus medical history. This information about the LDIQ means that it may be possible to expand lupus research to include cases where direct physician assessments of patients may not be possible.