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

Abstract

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 methodological quality of each included study was assessed using the Critical Appraisal Screening Programme tool. Study findings were then subjected to a metasummary and meta-synthesis. Results:Twenty-six studies with a good overall methodological quality have been included, documenting the experience of 565 adult patients (95% women). A total of 17 codes emerged, summarising 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%), respectively. The codes were then categorised into five main themes, summarising the experience of living with SLE: (1) 'Experiencing waves of emotions due to the unpredictable nature of the

Beliefs, Experiences, and Openness Regarding Dietary Interventions: Data From an Urban Hispanic Population With Rheumatic Disease in the US

“…Interestingly, many patients in our study reported that overall energy levels, pain, sleep, and mood improved with dietary manipulation, suggesting that these quality of life (QoL) domains could benefit from nutritional interventions in rheumatic disease patients. This is especially important, as rheumatic disease patients, such as those with SLE, often have unmet QoL issues that do not correlate well with measured disease activity or use of immunosuppression (30,31). Indeed, prior studies of nutrition and/or dietary supplementation on patient-reported outcomes and QoL measures in rheumatic disease patients have found that nutritional intake favorably affects a variety of QoL domains, particularly in SLE and RA (32)(33)(34).…”

Evaluating the Disease-Related Experiences of TikTok Users With Lupus Erythematosus: Qualitative and Content Analysis

“…Patients with LE frequently experience detriments to quality of life and daily functioning [ 3 , 4 ]. Because of this, a number of qualitative studies were conducted over the last decade that attempted to better understand patient experiences with LE [ 5 ]. However, the large majority of these studies recruited participants from clinical settings; thus, clear gaps persist in understanding how experiences with LE can be improved in individuals outside the health care system [ 3 , 5 ].…”

Vagus nerve stimulation as a novel treatment for systemic lupus erythematous: study protocol for a randomised, parallel-group, sham-controlled investigator-initiated clinical trial, the SLE-VNS study

“… 6 Fatigue and musculoskeletal pain are reported as the subjectively most burdensome symptom for patients with SLE. 7 Consequently, SLE has marked impact on morbidity, mortality, healthcare costs and quality of life.…”

“…Fatigue occurs in >80%4 5 and is reported as the main barrier to maintaining employment in patients with SLE 6. Fatigue and musculoskeletal pain are reported as the subjectively most burdensome symptom for patients with SLE 7. Consequently, SLE has marked impact on morbidity, mortality, healthcare costs and quality of life.…”

“…Immunosuppressants, the cornerstone of current care, can have multiple adverse effects, including diabetes, osteoporosis and opportunistic infections,8 9 and may have only limited effect on controlling disease activity,10 fatigue and other constitutional symptoms 7. Thus, alternative treatments that can attenuate autoimmune inflammation and treatment-resistant symptoms with few adverse effects are in demand.…”