LUNELORD: A descriptive, prospective study on the demographics, disease characteristics and health-related quality of life of patients with LUpus NEphritis and long-term ORgan damage in rheumatology clinics in the Arabian Gulf

BackgroundLupus nephritis (LN) is a major cause of morbidity and mortality among patients with systemic lupus erythematosus. However, there is a paucity of literature on the clinical characteristics and standard of care of patients in the Arabian Gulf. The LUNELORD study aimed to describe the demographics, clinical characteristics, treatment patterns and health-related quality of life (HRQoL) of patients with LN in the region.MethodsEligible adult patients with LN were enrolled from rheumatology centres in the UAE, Qatar, Oman and Kuwait and followed up for 12 months of routine care. Data were abstracted retrospectively from available medical charts up to 12 months prior to study enrolment, and prospectively from patients' medical charts after each follow-up visit. Patients completed the 36-Item Short Form Health Survey (SF-36) at the baseline and Month 12 visits to assess HRQoL.ResultsIncluded patients (N = 193) were predominantly female (83.9%) and of Arab ethnicity (85.0%), with a mean (standard deviation SD) age of 37.2 (10.4) years. Among patients with available data, renal biopsy was performed in 123 (64.4%) patients, and most had ISN/RPS class V (23.4%), IV (22.7%) or III (20.6%) LN. At baseline, the most frequently used medications were hydroxychloroquine (96.4%), prednisolone (78.8%) and mycophenolate mofetil (69.3%). Renal remission was achieved by 123 (63.7%) patients during the follow-up period; end-stage renal disease occurred in 12/177 (6.8%) patients. A significant association was found between reduced anti-double-stranded DNA levels and occurrence of renal remission at Months 3, 6 and 9. Significant improvements from baseline to Month 12 were observed in the mean (SD) general health SF-36 domain score (+9.5 42.5; p = 0.002); overall SF-36 and other domain scores remained constant.ConclusionsLUNELORD demonstrated a substantial burden of LN disease among patients and highlighted variable adherence to international management and treatment guidelines among rheumatologists in the Arabian Gulf. These findings emphasise the need for early diagnosis, careful monitoring and effective management to optimise renal outcomes and patient HRQoL, which may be achieved by increasing awareness of, and compliance with, international guidelines.