Background Little is known about patient reported outcomes (PRO) in lupus nephritis (LN), and no studies using a disease targeted PRO tool have been undertaken thus far.
Objectives To describe quality of life (QOL) among patients with LN using a valid and reliable disease targeted PRO measure (LupusPRO).
Methods Cross sectional data obtained from patients with systemic lupus erythematosus (SLE) during psychometric evaluation studies of LupusPRO from various countries were compared between those: 1) with and without LN and 2) with active and inactive-LN.” Data compared included demographics, disease characteristics, and LupusPRO constructs. Presence of LN was present if listed among the ACR classification criteria (ACR-LN), while presence of active LN was based on presence of urinary casts, hematuria, proteinuria or pyuria in the disease activity assessment (SELENA-SLEDAI) performed at the time of the study visit. LupusPRO has Health related QOL (HRQOL) and non-HRQOL constructs. HRQOL domains include lupus symptoms, cognition, medication, procreation, physical health, emotional health, pain-vitality and body image. Non-HRQOL domains include desires-goals, social support, coping and satisfaction with care. Non-parametric tests were used to make comparisons, and p values ≤0.05 were considered significant.
Results There were 1,259 SLE patients; ninety-four percent were women and their mean (SD) age was 41.7 (13.5) yrs. Five-hundred and thirty-nine had ACR-LN. These patients were younger, had greater disease activity (PGA, Total SELENA-SLEDAI) and damage (SLICC/ACR) than those without LN. Summary HRQOL and non-HRQOL scores were similar in both groups; however, those with ACR-LN had significantly worse scores on medications and procreation domains, while those without ACR-LN had worse scores on Pain-Vitality domains.
129/540 ACR-LN patients had active LN. Patients with active LN were younger, had significantly greater disease activity (PGA, Total SELENA-SLEDAI), worse HRQOL and non-HRQOL than patients with inactive LN. Specific domains scores adversely affected among active LN patients were lupus symptoms, medications, procreation, emotional health, body image and desires-goals. Satisfaction with care was significantly higher among patients with active LN as compared to inactive LN patients.
Conclusions LN adversely affects several specific QOL domains and physicians need to be aware of these concerns
Disclosure of Interest None declared