The pain, planning, emotional health, and fatigue quality of life domains were most impacted as a result of severe systemic lupus erythematosus (SLE) flares.
New research finds systemic lupus erythematosus (SLE) flares have a significant impact on health care-related quality of life (HRQoL), but only when the flares are severe in nature.
Corresponding author Manuel Francisco Ugarte-Gil, MD, MSc, of Peru’s Guillermo Almenara Irigoyen National Hospital, and colleagues explained that while management of SLE has improved significantly, the disease still has a major impact on the daily lives of patients. A number of socioeconomic factors have been linked with lower HRQOL in these patients, but so far the association between disease activity or damage and HRQOL remains controversial, they noted. A handful of studies have suggested that disease flares negatively impact HRQOL. However, Ugarte-Gil and colleagues wanted to know whether the severity of the flare might be important in understanding the flare’s impact on quality of life.
To find out, they utilized the Almenara Lupus Cohort, a group of patients first assembled in 2012 who have been treated in the rheumatology department at Ugarte-Gil’s hospital in Peru. In the present study, patients with at least 2 visits to the hospital between 2015 and 2020 were included in the analysis. The authors defined flares as increases of at least 4 points on the SLE Disease Activity Index 2000 (SLEDAI-2K). The definition of “severe” flares was a final SLEDAI-2K increase of at least 12 points. All other flares were categorized as “mild-moderate.” The LupusQoL tool was used to measure HRQoL.
That breakdown between severe and mild-moderate flares proved important. A total of 277 patients were included in the study, and they had a total of 1098 visits to the rheumatology department over the course of the study. Within those visits, 115 patient flares were identified, and all but 17 were considered mild-moderate. The patients in the study were predominantly female (92.4%), had an average disease duration of 9.1 years, and were an average of 36.0 years old at diagnosis.
On average, patients had 4.8 visits to the hospital, with a mean follow-up of 2.7 years. At their baseline visit, patients most affected LupusQoL domains were burdening others, intimate relationship effects, and body image impacts. Only emotional health was found to be lower in patients who would subsequently be identified as having had severe flares.
In later visits, however, patients with severe flares saw significant impacts in their pain, planning, emotional health, and fatigue domains, while those with mild-moderate flares had no significant differences from their index visit.
The authors said their findings, which were conducted in a majority-Mestizo population, generally align with earlier research done in Latin America, North America, and the United Kingdom.
“Disease activity has been associated with HRQoL in previous reports, but these studies evaluated this association cross-sectionally,” the authors said. “A better control of disease activity, defined as the achievement of remission or low disease activity, has been associated with a better HRQoL in several cohortswhich is consistent with the data from our report.”
As for the finding that emotional health was already lower at baseline in patients who would go on to have severe flares, the authors speculated that it could be a sign that the patient has more severe disease, or it could be the result of disease manifestations that the patient feels but which are not characterized by disease activity indices. The authors said future studies should attempt to better understand these associations.
Ugarte-Gil MF, Gamboa-Cardenas RV, Reátegui-Sokolova C, et al. Severe flares are associated with a poorer health-related quality of life (HRQoL) in patients with SLE: data from the Almenara Lupus Cohort. Lupus Sci Med. 2022;9(1):e000641. doi:10.1136/lupus-2021-000641