Development of a Conceptual Model to Understand Disease Burden in Patients With Systemic Lupus Erythematosus and Organ Damage

• DOI: 10.36469/jheor.2023.82228
• Publication Date: 2023-08-18T15:30:06Z
• Authors: Lynne Broderick; Wen-Hung Chen; Roger Levy; April Mitchell Fo...; Cindy Umanzor Fig...; Kerry Gairy; Deven Chauhan
• Keywords: Conceptual model; Conceptual framework

Background: Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that can lead to irreversible organ damage (OD). Data describing the patient burden of OD, as compared with SLE without are limited. Objective: To develop comprehensive conceptual model experienced by patients living SLE-associated OD. Methods: There were three phases this qualitative study. First, targeted literature review was conducted inform draft model. Second, key opinion leaders (KOLs) interviewed assess and help shape interview materials. Third, different demographic backgrounds from across United States individually gather their perspectives on concept elicitation interviews KOLs coded analyzed using NVivo software identify concepts overall Findings KOL used finalize Results: highlighted OD carried higher rate mortality than alone. Participants (n = 40) detrimental impacts 4 areas lives: physical, cognitive, psychosocial functioning, economic work-related well-being. Physical described all participants, often affecting ability perform everyday tasks. Many also deterioration cognitive functioning. Almost participants emotional challenges relationships social lives resulting Additionally, imposed an including increased healthcare costs. had more severe debilitating impact aspects patient’s quality life prior development, further limitations in activities daily after development Discussion: Study findings guided fully represents experience highlighting additional when Conclusions: The will improvements management, which may result better outcomes aid clinical outcome assessments burden.