The following is a summary of “Patient and physician perspectives of systemic lupus erythematosus flare: A qualitative study,” published in the December 2023 issue of Rheumatology by Rogers et al.
Despite Systemic lupus erythematosus (SLE) flares causing significant harm, we suspected a gap between how doctors and patients perceive them. Researchers conducted a retrospective study to delve into the distinct narratives of SLE flares, as told by patients and their physicians.
They conducted a qualitative descriptive study, employing in-depth interviews with a purposeful sample of SLE patients (meeting 1997 ACR or SLICC criteria) and rheumatologists. The interviews were recorded, transcribed, and analyzed using applied thematic analysis.
The results showed that 42 SLE patient participants completed interviews, reflecting various lupus activity levels. Most described flare symptoms as joint pain, fatigue, and lasting skin issues. Objective signs or laboratory measures were rarely included as features of flare.
Thirteen rheumatologists from 10 academic and 3 community settings were interviewed. Most defined flare as increased or worsening lupus disease activity, with just over half requiring objective findings. Half of the rheumatologists included patient-reported symptoms such as fatigue and pain.
Investigators concluded that in a tale of two narratives, lupus patients and physicians differed in their descriptions of flares, calling for a revised definition to bridge the gap between perceived experience and clinical assessment.
Source: jrheum.org/content/early/2023/12/11/jrheum.2023-0721
