Patient Experiences of Systemic Lupus Erythematosus: Findings From a Systematic Review, Meta‐Summary, and Meta‐Synthesis

OBJECTIVE: To explore the experience of patients with systemic lupus erythematosus (SLE). METHODS: A systematic review of qualitative studies published in English in the past 10 years and identified through the PubMed, CINAHL, Scopus, and Web of Science databases was performed following the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines. The methodologic quality of each included study was assessed using the Critical Appraisal Screening Programme tool. Study findings were then subjected to a meta‐summary and meta‐synthesis. RESULTS: Twenty‐six studies with a good overall methodologic quality were included, documenting the experience of 565 adult patients (95% women). A total of 17 codes emerged, summarizing the life experience of SLE patients; the most and least frequent codes in the meta‐summary were “feeling not as I usually do” (69.2%) and “having wishes” (7.7%). The codes were then categorized into 5 main themes, summarizing the experience of living with SLE: 1) “experiencing waves of emotions due to the unpredictable nature of the disease,” 2) “trying to live an ordinary life,” 3) “listening to and obeying the body's limitations,” 4) “reviewing my life projects,” and 5) “dealing with future uncertainties.” CONCLUSION: Several qualitative studies have been published to date using good methodologic approaches. According to the findings, SLE negatively impacts patient experiences by affecting multiple dimensions of their daily lives, with fatigue and pain as the most frequent symptoms.